"A" is for Aiden, NOT Albino

Aiden at the Little Gym

2011-01-26T07:48:00.000-08:00

This is Aiden at the Little Gym, which is an excellent program that has helped Aiden further develop his gross motor skills, judging perception and depth and help develop his upper body strength. Building uper body strength even in children this young is improtant, which I thought was interesting when I learned this from his PT eval. Upper Body strength directly effects their fine motor skills, and this is in area that Aiden is still behind in, but working on his development here at the Little Gym has helped him improve a great deal! Its has been amazing to watch.

Wonder Pets song

2011-01-02T18:40:00.000-08:00

Aiden on the Texan Game

2011-01-02T18:36:00.000-08:00

Aiden's Spring Sing

2010-05-17T20:00:00.001-07:00

Today Aiden had his Spring Sing at his Mothers Day Out program. They have been working on it for the second part of year. He did okay for the most part, mainly new all the words; more so than all the hand guesters, but we will continue to work on :) Its about a 13 minute video so I hope you enjoy! Hugs!

Just some fun cute stuff of my boys

2010-05-17T09:22:00.000-07:00

Hi there! I just wanted to upload some cute vidoes of my little love muffins! I hope you enjoy (I'm still learning all this video technical stuff....)

ECI Medical Diagnosis List and Me...I'm up for the challenge

2010-04-24T09:52:00.000-07:00

Hi there!

Ok I know its been forever since I have updated this blog...no excuses...just have not made the time :( Sorry.

My newest project with Albinism has been trying to get Albinism added to the ECI (early childhood intervention) Medical Diagnosis List. Each state through their EI department has a list of medical conditions that if a child is born with or acquires, they automatically qualify for services and don't have to go through the evaluation process to determine if they are eligible for services. They still go through an evaluation process to determine where they are at developmentally and to write an efficient IFSP but qualifying them is no big deal.

Something came up a few weeks ago that made me think back to when Aiden was born and he qualified for ECI. I have heard from many parents since I was blessed with Aiden about the struggles with getting their child with Albinism qualifies for services, and it they do actually get them services it is not what they need or deserve, and like in our case they were qualified on something ridiculous rather than the permanent condition of Albinism and all that it entails for our kiddos. Aiden was qualified on Atypical behavior because he could not tolerate tummy time at 2 months old because of his Acid reflex, which at the end of the day he was qualified and we got our foot in the door but the way it was done was so silly to me when his Albinism was the obvious issue to developmental concern, as it considered to be at risk for developmental delay...but its not on the list so it didn't count, and that is what I am going to change.

I have been collecting letters from medical professionals requesting that this be added to the list as backup to my request so I do not seem like a whinny parent and I was asking for parents of children with albinism in our chapter to write letters either about their positive or negative experiences getting their child qualified for early intervention services however I have not gotten the response I had hoped for from our parents :(

I have been given some new contacts in Austin to approach with this request so I will keep you posted. Please keep your fingers crossed and say a prayer!

some more new pics

2009-10-21T14:42:00.001-07:00

Preston's action shot going into pool
Aiden likes to help mommy with the laundry

Preston eating his cotton candy at the MDO fall festival

Aidend is ready to go

Aiden and preston relaxing after an evening at the pumpkin patch

some new pics from this summer

2009-10-21T14:38:00.000-07:00

Chiari one malformation

2009-10-21T14:34:00.000-07:00

Last week after an appointment with a neurosurgeon at Texas Children's we had our worries put at ease and found out that although he does in fact have a malformation it is very minimal and at this point and for several more years he does not feel like its something we need to worry about. He said in the rare occasion it can cause issues with potty training (sending/receiving signals learning to go) but other than that he does not anticipate any significant problems. There is a small chance in his later years (teens young adult) it could raise some issues but its only a possibility. YEA!!!!!!!! Finally a diagnosis that is no biggie :)

Aiden's new diagnosis

2009-09-21T08:27:00.000-07:00

During our recent stay with Texas Children's Hospital, during a CT scan to check for bleeding after a fall, an additional issue was noticed. We were giving the diagnosis of a Chiari One Malformation, which is a structural defects in the cerebellum. I am almost positive that this has nothing to do with his Albinism; in fact I think that it due to a different type of genetic disorder. Before I was born, my parents had another daughter that died soon after birth from a condition called Spina Bifida, and because of that my OB kept me on a prescription of Folic Acid to prevent this condition in both our boys. I think that this is closely related however we are still learning. We have the pedi registering Aiden to learn more about this finding and Preston to check him out to be sure, and then once they are registered with some part of the insurance we can schedule an MRI and appointment with a Nero Surgeon at Texas Children to learn more about their exact diagnosis and what it means for their life and their future. Part of me feels really guilty because if this is a genetic condition, then this is now 3 different genetic conditions that I have passed down to my little Aiden, and all of them cause him to live his life differently than "typical" developing children. Part of me believe that God has great plans for Aiden especially for him to give him all these things in his life to learn about and over come but I still cannot help but feel responsible. Oh well, I know both my boys will be something GREAT. You can go the following website to read and learn more if you would like. Hugs to all!

http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm

2009-09-08T09:22:00.000-07:00

Preston started Pre-K

2009-09-08T08:55:00.000-07:00

This fall Preston started Pre-K. It was so exciting and he was so ready to go back to school. He is one of 3 boys in his class and there are 6 girls. Every time I go to pick him up he is always the only boys sitting a table full of girls. His daddy is mighty proud and all I can think is that he has his whole life to worry about girls why can't he just hang with the boys right now???? I am totally not ready for this, I have barely recovered from the little girls in his class last year chasing after him as we were leaving to give him kisses!
His teacher is very by the book. They have take home folders that are labeled with a keep at home side and a return to teacher side. Preston just started potty training a week before school started and when I spoke to the director about it she said it would be fine if he was not fully potty trained by the start of the school year (its a requirement to attend Pre-K which I think it just absolutely ridiculous) since he had a speech delay and we were unable to communicate to properly potty train when he was younger but his teacher is not pleased when he goes in his underwear, I feel like I am being scolded when she tells me, and Preston told me that his teacher put him in time out for going potty in his pants at school so I will be checking into that. We are looking to put him in soccer this fall as well, get some of that energy out!!!!

Aiden's New Milestone

2009-09-08T08:29:00.000-07:00

WALKING:
Aiden has been moving right along this summer! His birthday is at the end of June and a week after his birthday he started walking! We were over at one of my best friend's House (Jena) and we were just talking up a storm while our boys were playing and all the sudden Aiden just stood up and walked across the living room! I kid you not it was like he had been walking for months.....never wobbled never hesitated just walked perfectly! I started jumping up and down screaming and clapping, and Aiden could tell he had done something good. He started clapping for himself. It was such an amazing sight. I swear my friend Jena is a good luck charm; I told her from now on anytime I need my kids to learn something I am coming to hang out with her so that her good luck will rub off and they will do what I want! When Preston was leaning to crawl, he would not do it; we tried and tried and then one night Jena came over and Preston saw her (and her pizza) and he just hopped up on all 4's and crawled right to her, and then here we were again with Jena and Aiden starts walking......I tell you she's the lucky charm!

TALKING:
Aiden also said his first big word: HOT DOG. We were standing at the fridge deciding what to eat for lunch one day and Preston said he wanted a hot dog (as always) and Aiden just busted out with hot dog. He is now 14 months and says hot dog, hat, hot, ball, mama, bite, dada, all done, (approximates clean up when we sing the clean up song) no no, bye bye, and he signs for more and milk.

All these wonderful new thing just make my heart explode with joy and excitement. When Aiden was little I read so many times and were told by so many professionals that because of his visual impairment that it would be later than the "average" developmental age when he would walk and talk. There was no doubt that he would walk and talk it was just normal for VI kids to be a little behind in that area because so much of learning to walk and talk is visual not to mention the lack of depth perception that can also make VI kids hesitant to walk. I am just so proud that he is doing so well, and so far maintaining to stay with in the average age for developmental milestones. His annual evaluation is coming up next month with ECI so I will have a better idea of where he really is.

We also started him in Mother's Day Out this fall. There are only 7 kids in his class and 3 teachers so I really like that ratio. The main teacher does not seem to want to be very cooperative with applying his sunscreen before they go outside so we will continue to deal with that as needed. He is also the dominant one in the class. I think he is the only one with a sibling and for that reason plays rougher than the other kids since Preston as been malling him since the day he was born! We actually got a note sent home on the first day of school saying that Aiden pulled hair A LOT (with a lot being underlined) and that we needed to work on that with him. Oh well boys will be boys.

Aiden is walking!

2009-07-27T14:41:00.000-07:00

Hey there everyone! It has been a long time since I had time to get on here and really let yall know whats up. I wish I could have more time to devote to this site but this summer has just taken over with my summer school, Preston's school PPCD evaluation, additional evals, Dr. Appointments, the boys weekly ECI and VI appointments and of course the day to day little things....there just never seems to be enough time in the day or enough days in the week.

The most important and exciting news is that Aiden started walking this past thursday, so before he turned 13 months! We were at a friend of mines and we were talking not really paying much attention to the boys as they were playing on the floor and all the sudden Aiden stood up and just started walking across the living room as if he has done it forever. It was the most incredible feeling to see him trust himself to let go and walk. He was sooooo proud of himself. He would stop and clap for himself and laugh.

Preston is doing well too. He will be 3 in about 2 weeks and his speech and his understanding of concepts is just incredible. He is always saying something to crack me up, and everyday he amazes me with the things he understand and the way he responds to me.

We also attended the North Texas NOAH meeting last weekend in Dallas. We have some friends of mine that I have known since High School that live in Flower Mound and they were kind enough to let us stay with them so we did not have to spend money on a hotel and it was soooo good to see them again and to finally meet each others kiddos. IT was so nice to finally put faces to names of other parents we have been talking to online since Aiden was born and to meet other new families. It was a great mini conference and a good guide for me as I put the final touches on my South Texas NOAH meeting this Saturday. I am nervous but excited. I hope it goes well.

South Texas NOAH

2009-06-02T07:50:00.000-07:00

Hello all! I just wanted to update you that we are having our first official south Texas meet & greet meeting on August 1st from 3-6 pm. The location is still in the works. I have a place reserved in the Heights but I am waiting to hear from the University of Houston for a bigger location so that is why the exact location has not been announced yet but keep checkin in!

I spent the last 2 days emailing every VI teacher I could find and every school district I would find south of Dallas to inform them of our meeting. I also contacted DARS to let them know so if they have any families with Albinism they would pass on my email and information. If anyone reading this needs info please contact me via email at stxnoahmom@yahoo.com.

I am nervous but excited too! I cannot wait to see how it turns out! Wish us luck!

xoxoxo,

Monica

Man its been a while....

2009-05-22T20:52:00.000-07:00

Hey there yall ....yes I am still alive! It has been a BUSY last few months....school was ending, finals (last to receive my associates) which after my algebra class this summer I will have and on to UH! The Boys are doing well. Preston is talking up a storm..attitude and all and Aiden is so far right in line with his developmental milestones. His walking is my new concern. Because of his lack of vision he also lacks the ability to learn how to maneuver his body with in his environment and so as he is learning to walk he walks like a robot, literally so we are working on that with his OM and his PT and he is so dang smart he refuses to bare weight independently so that is also a new challenge. I have also decided to put Aiden in MDO next year so that he is around "typically" developing children as soon as possible. I think this will be good for him.

The BIGGEST and BEST news is that I have decided to start a South Texas NOAH group. Its undecided yet if it will become an official chapter (that is my ultimate goal) but I am hosting our first meet & greet in August and I hope to have a wonderful turn out and good feedback. I have lots of things planned and hope it to be a success for Aiden and other with Albinism or parents of people with Albinism to come together as sort of like an extended family type thing. I know how bad I wanted to meet other parents who had been through what I was going through when Aiden was born and how desperately I wanted to meet an older person with Albinism to see the reality of what Aiden would face and there was no one like that for me, so I have decided to change that...so here I go.

I hope all are doing well. Take care!

Love,
Monica, Preston and Aiden

Update.......its a long one

2009-02-24T09:31:00.000-08:00

Hey there everyone...I know its been a while since I have updated on here, and I apologize. Things have been crazy! I have started back for what I hope to be my last semester at HCCS (minus the one class I have to take in the 1st summer session), and Preston is in his "second semester" of his Mother's Day Out and making so much progress with trying to sound out new words every day! Most of them are still hard to make out if you are not around him enough but me, his teachers, and his therapists can really see a difference! We have a meeting in about a week with the school district to evaluate him for their PPCD program to continue to help his speech since ECI will not see him after he turns 3, and we may just keep him in the MDO program in the mornings and the PPCD or whatever else program he may qualify for in the afternoons!

Aiden is just moving right along....literally! He started crawling about a week and a half ago and I was able to leave him in the middle of the floor with some toys and that was just fine. With in a week he was crawling so fast everywhere, and how now started pulling up on anything he can get his hands on! I came out from the bedroom and he was half way up the entertainment center! Although is vision tested at 20/2800 you would never know it if I did not tell you, that he was legally blind. He goes after toys and little things on the floor as a typical child would. Everyday he amazes me with (at least for now) how little is visual impairment effects him....of course he is only 7 months old so there not too much that goes on in his little world. I remember how scared I was when I was learning about what Albinism was and what it meant and the fear in my heart that he might never be able to see the stars in the sky or a rainbow after it rains, and well enough to drive, and now with each day I learn a little more, feel a little less scared, and my hopes are restored for him. There are still hard moments though, like when he learned to crawl. Any infant when learning to crawl does not know right away how to stop and change direction, they just go in the direction they start, so I expected this with Aiden but I did not think about his vision effecting his crawling until I watched him bump into the wall for the first 10 times. When he first started crawling he would crawl with his head down instead of looking forward, thus why he kept running into things and bumping his head. It was so hard to watch, and absolutely broke my heart, and even harder to keep the tone of strength and excitement in my voice when all I wanted to do was cry, but Aiden is very very very in tune with my tones in my voice and my emotions so I have to be careful. Finally I took his hand and touched it to the door to clue him in that something was there and he had to stop and think about it and pay a little more attention. Finally the next time he crawled towards the door he stopped and put his hand out and hit the door and then stopped and when back to a sitting position and turned a different direction to crawl!!! And so since, when I am with him he has not crawled into anything else! Also excitingly, Preston can sing about half of his ABC's when you sing with him!!!!!!!

Aiden's Eye Appointment

2009-01-31T22:22:00.000-08:00

We had his eye check up this past Wednesday at the U of H eye institute. IT was a long appointment. I brought all his toys (withand with out light/sound) that we use in his VI sessions) to show her what we have been working on and all that he can do. First they started with light response tests to see it he would follow it up/down/left/right and then did the same thing with a series of objects that had no light and sound and as long as she stayed with in a bout 2-3 feet from his face he was able to follow them. They also checked his Nystagmus to see if there was any change from his last visit and there was not other than it has slowed down a bit, and check him for any signs of Strabismus, which he still shows no evidence of.

Aiden did however did show farsightedness, which she indicated was measuring much more for a "typical" seeing child he age as well as what is common in Albinism so she wants up to really keep on eye on his eyes to see if he starts to develop and visual Strabismus. She said since he is really trying to learn to focus on and track objects and due to his farsightedness that this would be the time he would start developing the Strabismus, if at all. When the used the blackand white Teller cards to measure his visual acuity, he responded only to the card measuring 1600 except they had to move in half the distance for him to respond so she said that really makes it 2800 so he is measuring 20/2800 which of course is still in the category of "legally blind". It was still hard to hear but not quite as bad as the first time. I think what has really helped is that I see him every day responding to me and other people, toys and reaching and doing most everything that Preston (my 2 yr old w/o albinism) did at his age.

Lastly something interesting she and one her colleagues brought up was providing him with an artificial Iris with contacts. She says that there is not proof yet that this 100% works but it is here medical opinion that because people with Albinism lack to pigment in the iris(I think this is what she said but I get a report following the appointments so if I need to correct myself I will do so when I get it) to protect their eyes from the light and the amount of light that enters eye that this is what contributes to the lack of development of their eyes, so if you were to place a contact lenses in the eye with an artificial iris to lessen the amount of light that come in to be more like what/how I see it could let his eye develop more than what is expected. She is going to do some research with this procedure and actually wanted to consult Dr. Hertle about it and then we go back for his next exam when he is 1 yrs old make a decision at that time based on the research and recommendations. Keep all of you posted. I hope everyone is enjoying their weekend.

Preston's words of the day

2009-01-29T16:56:00.001-08:00

Exciting new for my little angel Preston!!! Today in his speech therapy, Preston said Red, Car, Dog, and on Monday he said, Pease for please, Tea, and made the "y" sound for yellow and the "g" sound for green and as always his big thing is "Oh no!" and "No, No" as he shakes his fingers. Its sooooo exciting and I am sooooooooo proud of him!

Exciting update's on the boys!!!!

2009-01-27T20:44:00.000-08:00

Yesterday, Preston had his 1st official session with his speech pathologist (his past sessions with ECI have been with a Developmental Specialist and Behavior Specialist that assist in the obvious as well as some speech but since his progress was not quite where we wanted it we added a actual licensed speech pathologist) and he did great! Preston responded to her very well and he said Please (but pronounced it pease) and Tea while they were playing with a tea set and Oh No, No NO, Bye as he waved, and made about 15 different animals sounds. That was a lot for Preston in a 45 minutes session and I was just sooo excited I kept clapping and hugging him and kissing him and I just wanted to cry to express the overwhelming excitement I had for him and his progress! I was so proud of him. Aside from his ECI sessions, at school he has been working on colors in the past few weeks and he now knows all his colors ( he can only say red, blue, and the "P" sound for purple and "yyeee" for yellow) but he can clearly find the color you ask him for and when given several different colors, like with Lego's or blocks for example, he can separate them all into color piles. He also can line up in the correct order the numbers 1-20.

Aiden has been doing much much better with his tummy time, and can fully sit up with no support. He also has begun to pull him self up on things and climb all over me when we play. I just cannot believe how fast he has grown up and accomplished over the past month. He is doing better transitioning between toys with out light and sound. And he really surprised me the other day. I had set him in his high chair for lunch and when he eats I usually give him the lid to whatever food I opened for him to play with. Well we happen to be eating a Gerber food which if you're a parent know they have clear lids. When I placed the lid on the high chair tray I didn't think he would be able to see it b/c its clear on top of a light colored background but sure enough he grabbed it immediately. I was very surprised and very excited. He is constantly amazing me with his ability to see even though he is classified as "legally blind". It just goes to show you that labels should never limit you and if you are a parent never let it limit your child. Insist on proving them wrong and you will be amazed!

Aiden actually has an eye appt tomorrow at the University of Houston Eye Institute so I cannot wait to see what they have to say. His last appoint was at 3 months old and he has made such incredible progress I cannot wait to show him off tomorrow! Look for the update!

Memories of old good times

2009-01-18T10:57:00.000-08:00

I was going through some old emails to clean some of my folders out and I found some OLD pictures so I thought I would share......

This was me and Dave at my 21st birthday dinner (almost 6 years ago)

This was me and Dave at a bar in Clear Lake watching the Superbowl in 2004

This was us at Sherlock's Pub In Clear Lake on St Patti's Day 2004 or 2005

This was us going home somewhere after going out

My how thins have changed over the last few yes but I wouldn't trade them for anything!

Just a few pics of my cutie pooties

2009-01-18T10:51:00.000-08:00

Aiden waiting for surgery in the totalyy oversized gown they made him wearThis is my big boy Preston!

Aiden eating in his high chair for the 1st time

Just smiling as cute as can be

And his serious face :)

Post-Surgery

2009-01-16T06:51:00.000-08:00

Well, its finally over and we are home safe and sound! Aiden did well during the surgery and was only fussy before because he was soooo hungry. He had fallen asleep for his nap by the time the nurses came to get him so that was helpful I think. I just gently transferred him from my shoulder to theirs and they said he remained calm and cuddly, so when they laid him on on the table to start the gas part of the anesthesia, he went back to sleep fast, so they said putting him under was no big deal, which made me feel good. I also sent his sunglasses back to put on for him b/c he was really getting irritated by all the bright florescent lights there, and I knew it would be even brighter in the OR so and I didn't want him to be anymore uncomfortable than he was already going to be. After they took him back Dave went downstairs to get us some lunch to eat int eh family waiting lounge so keep me occupied. I got teary but surprisingly didn't break down like I did when they took Preston back for his ear tube surgery, but I think Dave also made a good point that I kept thinking about. He said "you know honey, I am not trying to down play Aiden's surgery as not a big deal but we're at Tx Children's Hosp, and there are alot of other children here who are probably having a much more serious surgeries so try to not to get too upset" and he was right.

Seeing him in the ugly hospital crib still under the anesthesia was not pleasant but after about 20 minutes he started to wake up and he was not happy about the tube they put down his throat but we got that out quickly and they gave him to me immediately so I could nurse him and that helped but he was still really out of it and you could tell he was not to comfortable. It was so akward trying to hold him b/c I didn't want to accidentally push against his newly stitched (yest they actually sutured it off and stitched it back together rather than the clamp and snip) but we figured it out. They scary part soon started. He had a really hard time sustaining a "normal" oxygen level and when his oxygen would drop so would his heart rate, and it was not gradual either. It would start and then drop really fast and all the monitor would start going off and all the nurses would rush over and start pulling and tugging different things attached to him and giving him oxygen. This happened 3 different times and each time it happened it would drop lower than the last time but thankfully as he came more and more alert it was more and more stable. Finally after Aiden had sustained a normal oxygen level and heart rate by himself for 30 minutes they released him. They sent us home with a liquid form of Vikeden for his pain as well. HE really gave ,mommy a scare but he's okay now. The next scary part was changing his first diaper. Preston's seems like forever ago, so I was nervous. You can tell that he is irritable and uncomfortable but the meds help. I am very glad to have this over with. I can't help but to wonder now if Preston did not have his correctly or if it healed wrong now b/c they look so different so we are taking him to Aiden's doc to check. If he does need anything corrected better now than later.

Here we go....

2009-01-15T07:18:00.000-08:00

Well, Preston is eating breakfast and Aiden is bouncing out his last bounces in his bouncy chair before we pack up the car and head out to surgery. I am trying to be a strong mom but those of you who know me best know I am fighting to hold the tears back and my head can't stop spinning in a whirl wind of "what ifs". I hate that about myself but that's who I am and how my mind works.....and after he is out safe and fine I will feel silly for getting so worked up but that's how the story goes. Anyways the bags are packed and we are just waiting till 10am to leave, drop Preston and the sitter...can you imagine him trying to stay entertained for the 4 hrs in a hospital full of No No's ...totally not going to happen and then we will go. Update yall when we get home! Hugs and kisses!

Tomorrow's the big day!

2009-01-14T21:53:00.000-08:00

Well tomorrow at 1:30pm Aiden will be taken back to get his long awaited circumcision. Thankfully its being done at Texas Children's Hospital so that's a relief but still since he is being completely put under for about 15-30 minutes I am totally freaking out. I try not to (my husband says I am overly paranoid and over emotional and I say tough!! You married me so deal!!!! I cannot stand it when people say that when it comes to my kids. I know he is just giving me a hard time cause I cry about EVERYTHING) but it hard. They are letting me go back with him and I can hold him up until they walk through the OR doors so that is a little more comforting. When They took Preston to put the tubes in his ears I only got to take him through the check in doors and that was it, and I hated it although the reaching for me and screaming out MOMMY was much more dramatic and hard on me than Aiden who will just look confused at whatever nurse takes him. They say that he will be in the OR between 15-30 min and then sent to recovery where we will be waiting for a min of an hour and they we will be on our way. He will be restricted from his bouncy chair until he has completely healed and that will not go over well with him. he LOVES LOVES LOVES that thing! When we are out all day he gets really fussy just b/c he as not got to bounce all day, and as soon as we get home and he hears that toys he starts kicking his legs and smiles from ear to ear and will bounce for the next hour straight.......oh well. They are surprisingly being more lenient than I expected with his eating. He can have food and formula until 5:30am (after I finish this post I am going to go wake him up for a feeding its about 12am now) and then he can have breast milk till 9:30am and then only water and apple juice until 10:30am and then nothing after that until after his surgery is over. Please say a little prayer for him, that he is safe and healthy coming out of surgery with as little pain as possible. I will update later! xoxoxox

Aiden's VI update

2009-01-10T18:58:00.000-08:00

Aiden has been receiving services through ECI in combination with our school district for a little over a month now and so far he is right on track! His VI teacher through our district decided to start him on a program called the Oregon Program, which basically measures and keeps track (from birth to age 1)of his developmental, gross and fine motor skills and how they come into pay with his vision (more or lass) and compares them to what a "typical" seeing children's milestone's age so we can make sure he is staying on track. He is 6 months old now and although he is at the lower end of the "average" age range for his milestones he is still in the "average" time frame so I am pleased with that.

Aiden's Accomplishments:
So far the things we have worked on and he has been able to prove able to do on multiple times is:
1. Stares at a source of light

2. Visually begins to explore surroundings; momentary focus on variety of objects

3. Visually shifts attention between 2 objects (this one at first he was only able to do when the object had lights or sound to get his attention, but now he is able to do so with out the light & sound)
4. Regards own hands

5. Tracks objects moving horizontally AND vertically (he just accomplished this one this past week and was able to do with with both toys that have light/sound and ones with out!)

Aiden's Goals:
The next few things on our list that we have started working on with him and Aiden's new goals are:
1. Visually examine objects held in own hand (this one is hard because he is teething BIG TIME and everything goes right in his mouth! he could care less about what it looks like as long as it feels good on his gums)

2. Rescues toy dropped within reach. (the only toy so far he seems to react to when he drops it is this soft plush small basket ball that is one of Preston's mini basket ball toys For some reason he really loves that one...they fight over it all the time :)

3. While sitting, tracks toy moving across the table

4. Turns to look for objects out of view

5. Looks after toys which fall to the floor when a child is sitting in chair

Aiden has also started his won game of peek a boo! He likes to hold up his burping towel over his face and then pull it down It's funny though because he only wants to do with with his burp towel, not a blanket and he only likes it when he does it, no one else. If it do it he just stares at me like I'm crazy but if I am holding him and turn my head away from him where he cannot see it and then turn it back he smiles and laughs. He is very particular about certain things. I remember it was not that long ago that I had overwhelming questions and fear about his Albinism and what it really meant and what his life would be like. Those agonizing thoughts constantly running circles in my head of the unknown and wait to see was the hardest thing to do because until we got where ever it was I was waiting to learn about I was in the dark. Now thanks to the support and knowledge from my moms that have children with Albinism that I have met, and from my trust in God, I look so forward to each day with Aiden and all that he can do. He is always amazing me with how right in line with other's his age he is. He has been sitting up completely on his own since a few days before he turned 6 months and the other day he followed me in a complete circle from about 3 feet away!

I needed to take a shower so I moved Aiden's exersaucer in my room so I could listen for him and keep an eye on him from the bathroom and he could play, and when I got out I was in a plain all beige towel and as I passed him he looked up at me, smiled and laughed. It totally caught me off guard because he has never done that from that far so I stopped and asked him "Aiden can you see mommy?" He got the biggest smile on his face so I took a little step back further and walked side to side and he spun side to side in his exersaucer, and I just couldn't not believe it so to test this a little further I walked all the way around the exersaucer and he looked up at me the entire time never once moving his eyes off me and just smiled the cutest biggest smile he has ever smiled and I just grabbed him and kissed him and higged him all over almost in tears with the joy and excitement of that he could see that far. Now I know we have no idea how clear it was but there was no doubt that he recognized me and followed me and saw me! I will never forget this day!

To all the mommy's out there with newborn's or younger children than Aiden who have Albinism, it gets better they just need a little more time but be patient and nurturing and it will come.

Aiden's 1st Outing

2009-01-09T10:31:00.000-08:00

Well we finally had Aiden's first outing (other than the doctor visits and grocery store) to the Zoo. He was not thrilled about having to keep his sunglasses on and his hat (we had better luck with the sunglasses staying on than the hat) but after a while he got used to it. Preston did very well also! This was his first outing to the Zoo that he did not ride in the stroller and to my surprise he stayed right with me the whole time! He did so well that he talked mommy into buying him the Monkey back pack and toy snake in the gift shop and then a spinning light up toy from the vender's that sabotage the parents at the exit gate. All in all it was a fun exciting successful trip. We are on our way back this afternoon. Hope everyone is well. More to come later!

Mommy's favorite stocking stuffer

2008-12-22T21:09:00.000-08:00

Preston: 2 years, 4 months old today!

2008-12-18T07:40:00.000-08:00

Even though my little Aiden is growing up faster than I would like, my Preston is growing up even faster! I cannot believe he is almost 2 and a half. He seems so grown up! He acts like he hardly needs me anymore :( He only wants to use grown up cups and utensils, and his new thing is to take his own photos on the digital camera. Dave showed him how to look through the screen and look at what you want to take a pic of and he is actually pretty good now! He also just finished his first "semester" at Mother's Day Out, and they say he has made the most improvement in the class. We have his Behavior Therapist go with him to school on Tuesdays and she says she is is just so impressed with how well he is doing and interacting with the other children compared to 6 months ago. In fact when I went to pick him up this past Tuesday some little girl ran up to Preston as we were leaving and said "Bye Preston & gave him a hug and kiss"!!!! I could not believe it! I wanted to yell at her and tell her to get her little lips of my little boy! I am no where near ready to have girls be like that with my baby, but apparently the teacher says that he is very popular with the ladies in class...I said Oh GREAT! But you know his daddy was proud. His speech is coming along slowly but he has started to use the correct letter sound for a lot of things he wants, and is also learning animal sounds so that is exciting.

Aiden 5 months

2008-12-18T07:05:00.000-08:00

Well we have finally reached the 5 month old mark and it is just going by way to fast for mommy :( It seems like it was just the other day I brought him home and now he is growing up so fast and making so much progress I can hardly believe it! He just started holding his bottle by himself. He's not perfect at it but he is getting there. He has also been doing a little better on his tunny time since we started his Developmental Services with ECI. He has a session today actually so we will get to measure his progress again today. His Vision therapist will also be out today from the school district and she wanted to bring out an Occupational Therapist today to observe him just make sure we are covering everything. He is also doing well playing independently for short periods of time. He LOVES his jumper. He will just laugh and talk to himself while he bounces, sometimes for a whole hour! I can get so much done in that time or play with Preston for longer than normal when Aiden is awake. His sight is also improving much faster and much earlier than I had expected. A lot of other moms told me that one day I would be able to see a huge improvement, and it would just kind of be all of the sudden he would show me something he could see, and that's exactly how it was.

One day about a month ago my mother-in-law was holding him and we were talking and he turned around to look up at her and it just got this huge smile and look in his eyes like "I can see her"! I was so awesome, and ever since then he has started grabbing things if I am holding them, he always grabs for whatever food or drink I am bringing to my mouth (while I;m holding him) and he is reaching for toys with out help and at a further distance, and he is also not squinting near as bad when we are in a store (fluorescent lights) or when we go out side as dusk, so this is all very very exciting! We go for his 6 month eye check up again at the U of H eye institute at the end of Jan. and they will do another full eye exam (dilation and all since the last time he was dilated was at 3 weeks old) so hopefully we will get some new updated information about his sight. He is also finally going to get his circumcision done on the 15th of Jan. I am so nervous about it because they have to put him completely under for about 45 minutes, and anytime they are under for anytime is scary, plus I feel bad because even though in a few months he won't even remember this whole thing he's so much older than if we would have been able to do it when he was born, so I know its going to hurt way more, and poor thing he won't be able to go in his bouncer or exersaucers for 2 or 3 weeks, and those are he his favorite, and he is too young to give him ice cream for being a big brave boy....my poor Aiden. Just in case yall are wondering why we had to wait to so long for his circumcision..... I carry a blood disorder called Von Williebrands which is kind of like hemophilia, and whenever you have any type of surgery major or minor you have to have a special medication give via I.V. so that your blood will clot as its supposed to (It wont with out it) and so you'll be ok (hence I had to have a lot to during labor, and labor is VERY VERY risky for peps like me but that med. make a HUGE difference), so we had to test him for that so we would know what precautions, if any, to take. The Hospital refuses to do it unless they have clearance from a hematologist, and since that test takes about 2 weeks to come back, we had to wait. Secondly we also had to wait since he was diagnosed with Albinism at birth, we wanted to test him for HPS since there are precautions you have to take there (we were told) if he had that, but thankfully he tested Negative for both. But by the time all that blood work came back he was over a month old, and the Pedi Urologist at Tx. Children's said after they are over a month old its safest to wait till they are 6 months and older since they have to go completely under, apparently it safest for the anesthesia they receive, so that's what we are doing. He turns 6 months on 12/28 and the next opening was Jan. 15th.

Laugh of the Day

2008-12-08T05:47:00.001-08:00

After we got home from visiting Santa, which our boys were the only ones that did not cry in the line! I was going through the usual rituals when we got home...unpack the diaper bag, putting food and bottles back in the fridge, and changing diapers. I usually do Aiden first and as I was finishing with him, I started to smell what was coming next with Preston, so I asked him if he made a "poopie", and of course he said no like always. I told him I think he did cause mommy could smell a stinky and I asked him to come here so I could check him. Well I guess he thought he would be funny and check me! Before I could get up to check him, he was behind me pulling back my pants and underwear, stuck his head really close to my lower back (like I do him when I check him) and made an over exaggerated smell sound, and said "No mama" and went on his way. I died laughing for about 5 minutes.

The Boys

2008-12-03T17:21:00.001-08:00

Preston and Aiden are doing great!

Preston's speech is slowly but surely coming along and we just added a 3rd day to his Mother's Day Out schedule so hopefully that will help things as well. He is having sooo much fun at MDO. He is always soooo proud of all the art work he brings home, he loves to display it on the fireplace mantel and the fridge. He is doing making lots of friends and growing up way to fast for mommy! Aiden has finally started his ECI services and we finally got the VI teacher out here from the district and she will be finishing her assessment today and setting up ervices. SHe seemed to want to only come out once a month but said that if I really wanted her to she could find the time to come out weekly. That completely rubbed me the wrong way. Well DA! Of course I wanted her out weekly...hello he is visually impaired!!!!!!!!! We will have to see how that all works out. Bur for now we are just really working on his tummy time and prop sitting. We do know that he is being able to see better. WHat and how much we are not sure and probably won't have a godo idea until we go back to the eye doc. at UH in January but he is clearly starting to recognize different people, and reaching for things like never before! This is very very exciting. All the other moms I have made friends with that have children with Albinism told me that over time as his eyes developed and the pigment filled in his vision would improve and I would be amazed at what he could actually see and they were so right. It was like all of the sudden he could see things he had never been able to see before. I think that we take a lot of things for granted, like when our children are born that they can automatically see when in Aiden's case it is different, so being able to actually witness the moment when things finally changed for him was truly one of the most amazing experiences I have even had.

One Year Anniversary down...a lifetime to go !!!!!

2008-12-03T16:58:00.000-08:00

Dave and I just had our One Year Anniversary!

Goodness when people say that the 1st year of marriage is the hardest...they weren't kidding

but thankfully we made it..with a lot of patience, arguments, learning to argue effectively, but most of all with Faith. We have had a lot of things in our first year together. We not only became husband and wife but we also became a family for Preston and gave birth to Aiden James, and bought a house...and of course there was lovely Hurricane Ike that really tested things. All in all, it is a year that I would not have traded or changed for anything. With all its ups and downs, it was a year we needed to experience if we expect to stay married for the rest of our lives, as marriage is intended. I can say now with out a doubt in my mind (that often over thinks) and heart that this is the real deal and we will forever and always be one.

For our anniversary, Dave rented a room downtown at the Hotel Icon. We checked in around 3pm, where there were strawberries & champagne waiting! I was told to be ready to go by 5pm b/c we had dinner reservations at 5:30pm...we had dinner at the restaurant we got married (so elegant and sooo romantic). Then my next surprise (and those of you who really know Dave know that this was really really a surprise) were Tickets to the Ally Theatre to see a Christmas Carol where he actually did not fall asleep! I was totally surprised, and impressed and totally excited! After that we went back to the hotel and had some drinks in the lobby and then since he has planned such a perfect evening I agreed to go dancing (and yes since it was Dave who wanted to go you know it was to a hip hop club) where we danced and had a few drinks and then headed back. Finally when we got back as I was changing he was secretly running a bubble bath in the GINORMOUS bathtub and lined it with yumnmy smelly candles...and the rest I am sure you don't need me to spell out. It was soooo perfect and soooo romantic. The only off thing was in the middle of the night Dave got up to use the restroom and all the sudden there was a huge BOOM and BANG and he said he just tripped over his shoe and caught him self on the glass shower door but in the morning I found out what really happened was he tripped over his shoe and fell and wacked his head against the marble bath tub. I was so upset he did not tell me at the time he could have had a concussion but thankfully he was ok.

Aiden's 4 month Milestones

2008-11-09T13:08:00.000-08:00

My little Aiden James turned 4 months on October 28th and is moving right along! He clearly says "mama" now and smiles so big when he says it. He also has rolled over for the first time and when we say "up" (remember we have to teach him vocal ques since his sight does not allow him to "baby see baby do" yet) he pulls right up to a stand up position and then starts bouncing. He LOVES LOVES LOVES his bouncer and will go in there for an hour! He bounces himself to sleep all the time its so cute! He also can get the spoon into his mouth (but hasn't learned yet how to not choke himself), and will give you a HUG and KISS when you ask for it! Everyday he amazes me with what he can do and how and what he learns.

We won't know what and how much for sure until we go to our next eye appt (in Jan) and even then who knows how much they will actually be able to tell us, but we think, no we know he is starting to see things and better than ever before! The other day my mother in law was holding him on her lap with him sitting on her knee with his back to her and when she started talking he turned around, looked up and intently studied her face as if he was seeing it for the first time and then got the biggest smile as if he was thinking "I can see her!" It was amazing to see this happen in the process. We take sight for granted to much of the time, and since Preston could see as a typical seeing child since he was born I didn't really ever notice when he sight improved as a normal infant since he could see from the beginning but watching Aiden act as if he was finally seeing for the first time is an indescribable and exciting feeling! I tested my observation by not making the noise I always make prior to wiping his face and he turned his head away like he always does (he hates it when I wipe his face) and sometimes I will move my finger over his face and he grabs it and pulls it to his mouth (he is teething big time)! It is such a joyful feeling, and in someways even though we don't know what lies ahead, its a feeling of peace and relief, knowing that he can see enough to function at this age.

On Wednesday of this week he is FINALLY having the Vision Instructor from our school district coming out to do her assessment aside from the Texas State Eye Exam we had done and set p services and his ECI begins Thursday so hopefully his aid and us learning how to best help him is on its way!

Busy Busy Busy

2008-11-09T12:53:00.000-08:00

Hey there yall! I just wanted to say sorry that I have been MIA and not posting updates as much as I used to. We are nearing the end of the Fall Semester and since Hurricane Ike took so much time from school we are RUSHING to get everything in by the end of the semester so any free time away from the world of mommy (ya like that ever really happens!) and I get on the comp I am doing research for a paper, writing a speech, or studying for a test or quiz which leaves me with very little time for emails and blogging but I have a few minutes now so I thought I would type as much as my kids allow while they are occupied!

After speaking with my counselor at HCCS I will be able to graduate with my Associates Degree in May and then FINALLY its on to UHCL where I will get my Bachelors Degree in Elementary Education Special Education.....very exciting! As far as myself that's about it but another something very very very exciting......

NOVEMBER 24th is David and mine ONE YEAR ANNIVERSARY!!!!!!!!

It was questionable if we would make it and we have and in such a better place now! I am sooooo excited! Also he has agreed to consider another baby (not like in a year but in 4 or 5 years) so at least we finally got him off the NO track on onto the considering it. I had to promise to let him name it Christian if its a boy to get that 3rd little one but hey whats a name compared to another perfect little munchkin :)

A little change

2008-10-29T23:09:00.000-07:00

Hey there! Hope every one is well. As you can see I have made some changes to my blog, mainly just prettied it up a bit but also since I first started it I have read and learned so much about Albinism and it can be quite confusing with where to start and how to know whats myth and fact so as I have learned and read from Internet to emails to actually being lucky enough to meet in person other families with Albinism I have kept a list of links that I have come across that have so helpful information. I know a lot of you like to read the latest and greatest of things out there for our little Aiden so here are some great places to do that, and then they will also be there for any new moms (like the one I just met) that are just beginning the journey that I am still new at but have a little more under my belt than the them, and if I can be of any help to them as others have been to me I am all for it....so here you go! More pics to come after Halloween! Be safe and kisses and hugs to all....and always thanks for your love and support!

2008-10-13T21:29:00.001-07:00

I know it has been a while since my last post (sorry about that), things have been busy busy as usually around here but I wanted to make sure I got an update on here soon.
Starting with the Famous and disastrous Hurricane Ike...we were very blessed to not have any damage to our home. We live in the Clear Lake area and actually in one of the places that had a mandatory evacuation. We did evacuate closer into town near the Galleria with my sister in law and then came back 2 days later. Our neighbors who decided to stick it out said we only lost power for about an hour, however most of our friends were with out power so for the next week/week and a half we ran "hotel Blancas:. We had 10-12 people in/out of our house consistently, and I was a little offended that most everyone did not say thank you until after something was said and no one offered to help with ALL the extra grocery costs we encountered, or offer to pitch in for increase in water and electric bill we were going to get...they all had money to buy beer for this retarded "hurricane party" they insisted on carrying on but nothing else....a little selfish I thought but what do you do! Glad I got that off my chest!. During the hurricane Aiden got ear infections in both ears, but he never got a fever like Preston always does so I did not think of that at first, but 2 days later when he was screaming non stop I finally took him to the ER and they diagnosed him with 2 infections and they said that he had most likely had them for at least a week or so, prescribed him an antibiotic and sent us on our way. A week later he was still not better so we went back and they switched him to a stronger medicine but by this point his ear drum had burst so that only added to his discomfort. Then, a few days later he got a yeast infection in his diaper area from all the medicine, and then a few days after that he got some type of virus and broke out in a rash from head to toe. On top of all that he is teething badly and his acid reflex was really bothering him...which we were FINALLY given medicine for. Now everything has pretty much healed but my poor baby has had such a rough few weeks. Preston had started Mothers Day Out just prior to the hurricane so he still had not made the transition yet and then with not being able to go b/c of the hurricane starting over again was horrible. He cries every time we get up early and get him dressed even if we are going somewhere other than school he is convinced that that's where he is going and he cries and shakes his head no...its sooo sad. As for me, my school is finally getting back to norm and we are just playing MAJOR catch-up from the Hurricane so double the stuff is due each week now than before and trying to find study time is damn near impossible. Dave and mine's one year anniversary of being married (really together 8 years now) is coming up at the end of November and we are sooo excited. It has been a rough year with out a doubt but we have made it (and trust me there were MANY times I was sure we wouldn't), but more importantly, we have learned so much. We have learned how to communicate, and how to fight effectively...who knew such a concept existed! And we have learned to listen and how to just walk away, and we have learned how to say I'm sorry. We have learned how to pick up where the last one left off and make up for each others shortcomings. For the first time, in our long stressed out crazy hectic emotionally and some times childish and selfish 8 years, we are on the same page and in a place I knew existed but for a long time did not know how to get there. I am so thankful that we stuck it out. I know now, and trust in he and I, that we can make it through whatever comes our way, and that the big things that used to matter don't, just the little things, and most important are our boys.
There are a lot of people who did not believe in us as a couple, and a lot of people who didn't have the faith in us that we have in each other, and sadly I have lost friends that I thought would be there for my whole life because they did not like that I married David and for some reason felt like I chose him over them, and for them I am not sorry. I have always known in my heart that Dave was capable of being the man he is today and that is why I stuck around so long, and I feel so blessed to have him as my husband. He is a wonderful provider for our family, and loves our boys in such amazing ways!

Aiden's Latest Update

2008-09-27T21:46:00.001-07:00

We took Aiden to a new PO yesterday at the University of Houston Eye Institute. The team there has experience with Albinism as well as the Eye Enhancement Center which he will be transferred to when he is 3yrs old. I have gotten other referral to some other PO that have experience with Alibinism but its just so hard to know who to go to but we would like to check them out and most likely will over the next year.

At his appointment they did not dialate his eyes because he had them done at 3 weeks old (now 3 months) and they did not feel at this point over that time frame that much would have changed, and are going to get a copy of that exam from the other doctor. They will dialate him when we go back in the early part of January 2009.

They did several light tests, to see if he could follow the lights, how soon he noticed them as they moved from behind forward, up to down and down to up and he did just fine with all that, he was in the average range with typical seeing children his age so that was a positive moment….however when they help up boards with large high contrast balck and white designs on them he took n o notice of them and that is what typical seeing children should be able to see and interested in at this age, and it was at this point that she diagnosised him as visually impaired.

Although this is along the lines of what I expected to hear, epsecially after reading online and talking with my new mommy friends and hearing their experiences, it was still hard to hear. All along I have heard that I the first big sign of concern was that other moms did not feel like their baby looked at them, and I never thoguht that; every time I nursed him he would just look up at me and sometimes smile…but now maybe that is just what I thought I saw…..but then how could I have been so wrong. And then there are other times when he gazes up at the fan and smiles or up at the top of his swing at the animals and smiles or in a darker room stares at the little light coming in. When I lean over him and talk my mommy tlak to him and kiss him he smiles, but could that really only be from the comfort of my voice?

I thought for sure he could see me and now I don’t know if he really can or if he ever will and this fear and saddness is something I have never felt before and don’t know how to deal with. I know that it could always be worse but it does not take away that feeling. This is something as a mother I have not experienced before and I feel stuck, and my heart hurts. When I play with him and he smiles and laughs in my direction I think…”how can he not see” because he is responding just like Preston at that age and Preston can see; I Just don’t know. He is so perfect and beautiful to me that the reality tends to feel like its not there sometimes. I know that this is the first of many things to come with Aiden and I will do whatever it takes to get him whatever he needs and I REFUSE to let it or himself handicap him in anyway, but I hope that I subconsiously don’t end up handicapping him myself because I will always be so worried about him. I am or so I’m told that I am a worrier and over protective and I just don’t want that to get in the way. I believe that we are never given more than we can handle and I believe that my higher God trusted me with Aiden and knew that I was the best mom for him so if he’s got enough faith in me to trust me with something to precious than I should trust in that, but life is harder than that. My husband says that this is what makes me a good mom and makes him so proud of me. I once read a quote about motherhood that was so amazing and it perfectly describes everything as a mother and exactlu what I am feeling so I guess I will end it with that.

“Making the decision to have a child is momentous. It is to decide forever to have your heart go walking aorund outside your body”

Elizabeth Stone

A Week of First's!

2008-09-26T17:17:00.000-07:00

Well, as we quickly approach Aiden turning 3 months old on Sunday, he has accomplished some exciting milestones! First he can sit up with support! Secondly can almost roll over (favors his left side) completely. Next, he ate his first helping the Gerber Rice Cereal with DHA....boy was that a success! He gave me this look like..man mommy you have been holding out on me! Lastly, and the most exciting to me..HE LAUGHED! I was bouncing him on my tummy humming one of his songs he likes and he let out this incredible of so sweet sounding laugh! It was music to my hears and filled my heart with such excitement and joy I just started screaming and crying at the same time all the while kissing him all over! A child's laugh can sooth ones soul and the sound of that first laugh and the look on their face is one you never ever forget. I feel so blessed that I am able to hear such a wonderful sound!

To my new friends

2008-09-19T22:38:00.000-07:00

In the last few weeks I have been so blessed in meeting many mothers who also have children with Albinism. They found me (and I will be forever grateful that you did) and at first I was defensive about their comments until I met them and decided to open my eyes, ears, and heart to who they were and what they wanted to tell me and I think that was the best decision that I have ever made.

As a mother my children will always be the most important thing in my life, and for those of you who know me now I am such a mushy mommy when it comes to talking about the love I have for my kids. I love my children equally but being blessed with Aiden has taught me so much more about life and motherhood. These moms that I have met have been where I am now and where I am going and although they have never met me they reached out to me without any hesitation with open arms, open ears, and open hearts...to me-a stranger- because we had the most important thing in common-our children.

I cannot express the level of gratitude in my heart for these woman who I am proud to call me friends. I have spoken to some of them through e-mail and others on the phone and its as if I have known them my whole life.

I never understood until I had kids when people would say..."if you dont have kids then you dont get it'....and you dont. To me, Aiden is just my little boy who is perfect in every way. Sometimes I forget he has Albinism because to me he is perfect just they way he is, but when reality kicks in and we are at all kinds of doctors to get this and that tested I remembers my friends. There are so many misconceptions and incorrect information out there about Albinism that its just crazy, even some of which I was told, but having these other woman and parents who have been down the road that we have just began to travel down is so comforting. We are blessed to have such good friends and family that love him unconditionally and want to learn almost as much as we do, but since they are not in our shoes there is only so much they can understand. It has been such a relief to finally have moms who get-really get it, and who don't get tired of hearing about the ups and downs. This is a support group like no other; even my husband does not always get it because he is not a mom, and for the women who found me, and looked past me initial defensive response, my family-especailly Aiden and I-will be forever grateful.

Preston's 1st day of school!

2008-09-10T20:38:00.001-07:00

Last Friday (because Monday was labor day) Preston started his mothers-day-out school! He goes Mondays and Fridays and we are on the waiting list for a Tuesday to add as soon as a spot opens. He was all set to go with his new Mickey Mouse back pack and lunch box and of course his Polo shirt dad insisted on him wearing....Dave and I both took him to his first day along with little brother Aiden for support and the vieo camera was ready and waiting in hand catching every moment from the time we left the driveway till we were kicked out by the teachers.

At first he did well playing the the playroom with the other kids as I was checking him in, signing forms, etc. but then when it was time for us to leave he started crying..balling actually. He only goes from 9am to 1pm and that day seem to take forever to get to 1pm. When I picked him up the teacher said that he cried for an hour after we left, and cried so bad that he threw up. After that he clung to one of teachers, an odler hispanic lady (which I think he felt safe with since my mother in law is spanish as well as his first nanny he had for over a year). She said that he every once in a while would interact with other kids and then remember that he was all alone and start to fuss again. The only time he smiled was during outside time since he loves swings & slides. When it was time to go back inside he pointed to outside and said "outside" twice! When I got there he was the only kid alseep and he was cuddled up in his teachers arms.

It was hard day on both of us but hopefully he will get into the groove soon!

Preston's Speech Progress

2008-09-10T20:33:00.000-07:00

Just wanted to add a quick note. we have had Preston working with ECI since the end of June with a speech theropist and his babbling had increased and he is now pointing to everything and asking in his own way what it is and he has started pointing to Aiden and making the "B" sound...not sure if its for Brother or Baby but either way he has the right idea. His teacher also said that he pointed to outside and said "outside" cutting off the end of the word and then today Dave and him were playing with blocks and he he made the "BL" sound for blue!!!! This is so exciting its like waiting for his first word again. Just had to share!!!!

AWARENESS

2008-09-09T13:58:00.000-07:00

I have recently made some new friends; mothers that also have children with Albinism. They have been such a blessing and it has been so nice to have them to talk with. One mother inparticular, Mashawna, has been an inspiration. She created a slide show that is such a touching and beautiful way to educate people about the truth of Albinism. I was so moved by it that I had to share it with anyone and everyone. Thanks for all that you do Mashawna!

Click on the link below and enjoy (turn up your volumn when you watch it)

http://www.onetruemedia.com/shared?p=4d3829158be495ac31a6f5&skin_id=1009&utm_source=otm&utm_medium=text_url

Boys will be Boys...

2008-09-04T20:37:00.000-07:00

Today, my husband, the boys, and I were at the mall shopping for the boys outfits for a wedding we are attending this weekend and Preston did something I just had to share!

We were running around all day getting ready for his birthday party and the wedding this weekend and considering all the runnign around we did they were both pretty good but as little ones do Preston started getting roudy towards the end of our day so Dave and I stopped at American Cookie to get Preston a M&M cookie. Now usually he is really good with his cookies because he loves them so much he knows if he acts up... bye- bye cookie however today was different.

As Dave and I were comparing outfits for Aiden to wear and Preston was sitting his the stroller quitely eating his cookie (now yes I know that when thigs are too quite that usually means he is up to no good but for some reason that did not cross my mind this time). Once we had decided on an out fit I turned to Preston and what do I see....???? Him licking chocolate chunks off his toes! I said "preston what are you doing?" He smiled and began clapping for him self and then continued to lick all up and down and all in between his toes to make sure he did not miss a single drop of the chocolate he had so carefully smushed in between his toes.

Dave and I could not help but to bust out laughing, I tried to tell Preston that this was a no-no as I cleaned him up but I could not contain my laughter so I just gave up. My little boy is just full of his own personality and sometimes the wrong he does is so damn cute and funny all the decipline goes out the window. He made my day doing that so I just thought I would share the laughter with you!

The bond between Mother and Child

2008-08-25T23:30:00.000-07:00

As my journey into motherhood began a little over 2 years ago my life began to be filled with feelings and anticipations I have never felt before. There was so many nights I would lay in bed endlessly waiting to feel that first kick and then trying to distinguish if what I finally felt was an actually little kick or something less pleasant....and then not being able to sleep are the end as Preston was NEVER still.

I remember the closer it got to the big delivery day all the pregnancy fun stopped and the reality of labor began to set in, along with my maternal instincts and finally all the confusion and worry fell into place and it all made sense. I remember that final push that brought Preston into our world and the sound of his first cry is something that I will never forget. I remember the first time I held Preston after my long and tedious 15 hour and 59 min. labor and he stopped crying immediately; he knew who I was instantly by my voice and my love and how incredible it was.

I remember all the joys of the "first times" for everything Preston did, the running to get my camera or video camera to make sure no moment was missed. I remember thinking after my 3 month maternity leave that I was so ready to get back to the adult world I once knew but the minute my car door shut and I began to back out of the driveway I started to cry and it soon became uncontrollable and it was at that moment it became clear that my "adult world" as I had previously know it no longer existed and that was okay.

I remember the moment I found out we were pregnant with Aiden...as I was giving Preston a bath I could not shake the feeling that something was off as it dawned on my that if I did not get my cycle the next day I would officially be one day late, and with Dave and mine's history that was reason to consider another pregnancy, so I took the test and with in seconds the little line appeared. I looked at Preston as he smiled up at me and I thought "could this be right? Could we really be pregnant again?" So I took another test, and another and another until there was clearly no doubt. I remember what David said when I told him we were having another baby...he was so excited and I was so scared.

I remember thinking "...how could it be possible to love someone else as much as I love Preston...". I remember the first time I felt Aiden kick I knew instantly that God gives us so much love in our hearts that we are able to love all our children equally and how clear it became that becoming a mother of two was exactly what he had planned for me (and hopefully 1 or 2 more!) I remember feeling scared again the closer labor day came but then the relief that came after only a 10 minute, 10 push labor and I remember Aiden's first cry and seeing his face for the first time and being over whelmed with love and joy!

I remember seeing Aiden's white hair for the first time as he was pulled from me on that final push and blurting out"..is he albino...?" not knowing how I knew that or why it popped into my head, and I remember the pediatrician confirming his Albinism. I remember worrying that Aiden would be mad at me for being different and being scared of what he would face at school and in life, and then I remember looking into his eyes and seeing nothing but a normal beautiful baby boy that God felt I was the perfect mother for and being so grateful for having him. I love that Aiden is so young but knows who I am and if I am around him. I love that he can be sound asleep and the minute I walk into a room he wakes up for just for me. I love that right now (2 months old) that I am the only one who can make him smile.

Becomeing a mother has been then absolute most amazing gift I have ever been blessed with. Each day I am endlessly grateful that God chose me to be Preston and Aiden's mother. Each day hold new challenges and new excitement that is all part of being parents. Its very true that you don't always know what to do and children don't come with instructions, which is why it is so amazing to me that somehow I just know; I don't always know how I know, I just know what to do and when to do it. A maternal instinct is a gift that I was blessed with....it is so cool that a mother knows with in a matter of days what the different cries mean and so weird how dad's very rarely can hear the difference.

Most of all, the most incredible experience with both Preston and Aiden that I have had that shows the depth of our bonds is our hearts. I remember and will never ever forget both Preston and Aiden around a month old.....I was rocking them as they laid their head on my shoulder, their arms wrapped around my neck, and me kissing their forehead telling them how much I love them and suddenly I felt this hard thump in my chest. It obvious caught my attention and as I paid closer attention I realized that my heart had sped up and theirs had slowed down just enough for them to meet in the middle and our hearts were on the same beat. It was incredible, indescribable. Our bond and connection of mother and child is so strong and so solid that are hearts beat together..........absolutely extraordinary.

Aiden's Hematology Results....Good news!!!

2008-08-25T22:30:00.000-07:00

Well as you know we have been anxiously waiting for the phone call from Aiden's Hematologist from Texas Children's and we finally got it! She said that although his levels for the

Von Williebrands test (the blood disorder that I have, hoping I did not pass down to him) are in the very low range of normal, they are still in the normal range & that's what we want. As an extra precaution she suggested re-testing him at a year of age (very sensitive test that any minor thing could alter the results) just to make sure but she expects the same results.

The second test we had done was testing for any platelet disorders. Well his platelet test came back normal. Again as an extra precaution she would like to do one more platelet test that tests more specifically for some of the more rare types but feels confident that they will come back normal as well otherwise we would have most likely seen some type of abnormality on the original platelet disorder test but she would rather be definite than not know, which we agree.

We have a second eye appointment in early September at the Opthamology school at U of H; apparently they have alot of patients with albinism so they have a lot of constant work with ocular albinism. We are hoping to get Aiden in some type of study since he is soo little, they would be able to monitor him almost from birth where as we understand that most of their patients are much older. The boys also their check ups this week. Preston will have his 2 year exam and Aiden will have his 2 month check up and shots....so be on the look out for that information. We expect much improvement in Preston's weight this time!

My 2 year old!!!

2008-08-20T23:56:00.000-07:00

It was 2 years ago today, August 17, 2006 at 5:51pm that my water broke, I went into labor and my journey into motherhood began. It was a Thursday afternoon and I had just left work at 5pm, decided to stop at Burger King on my way home (cause at that point I was due any day so what was one more burger gonna hurt). I got home, sat at my kitchen table, enjoyed my burger stood up to throw my trash away and gush…..my water broke and Preston was on his way. IT wasn’t until 15 hours and 59 minutes later though that he finally decided to grace us with his entrance into the world. I pushed for almost 4 hours and he was finally here…cone head and all. It was the most magical moment yet in my life at that point. After the long wait and fears and stress and confusion and question upon question my child was finally here…and confirmed a boy (since there was some confusion in the ultra sounds) and the moment that I held him in my arms everything seemed to fall into place and motherhood just made sense.

The Amount of joy and love he filled my heart with instantly was indescribable. Although there were many sleepless nights there were more filled with smiles as I just watched him discover new things become his own person with his own thoughts and personality. I never knew the kind of love I was capable of having for someone, and something so tiny and so perfect, until his eyes met mine, he held my finger and smiled at me for the first time. He has taught me so much about life and myself. Being blessed as a parent is gift enough but knowing that God chose me to be his mother I will be eternally grateful for. Tomorrow morning at 8:59am he will officially be 2 years old!

2008-08-10T13:57:00.001-07:00

Preston at birth

Aiden at birth...alot of people said that they dont think they look alike and I think they totally do so you be the judge!

Kisses!

Aiden's Hematology Udate

2008-08-09T17:25:00.000-07:00

We just wanted to send out a fast note to let everyone know what the status of Aiden's Hematology's appointment was. He has his appointment at Texas Children's Hospital last Wed. with a really awesome doctor! Basically we just re-tested Aiden for the Von Willebrand's Disease to see whether or not I passed it on to him and then he was also tested for any platelet disorders that are affilated with Albinism. Neither of them are something you can take a daily medication for, you just monitor them and take extra precautions with (ei: like the extra medicatio I had to take in order to have a safe labor/delivery of the each of the boys). There is a 50% chance he could not have inherited the Von Willebrands (Preston did not) but no idea of the percentage of the platelet disorders. If he has both or either, she said absolutley NO contact sports of any kinds, no exception (you should have seen David's face when she said no Footbal...I thought he was going to cry!) We should have the results with in a week or so, and we will update you then! Take care and keepyour fingers crossed!!!!

Our Boys

2008-08-05T17:32:00.000-07:00

These are the 2 loves of our lives, Preston Julius and Aiden James. We were blessed with Preston in August 2006 and just gave birth to Aiden in June 2008. It has been quite an adventure into parenthood; the endless blessings and joys we could have never imagined! They are both so special and unique in there own way. My first baby Preston, seems so grown up all of the sudden but yet he is only 2. He is asserting his independance, and everything you try to do with him or help him with he just responds to you with "I CAN!" and so we stand back and let him him as we watch with amazement at all that he can do and understand. He is very interested in everything he can get his hands on, litterally. He is very hands on; he wants to learn how everything works...I was amazed that when I came home from delivering Aiden I discovered he had learned how to work the DVD player to set up a movie and turn the TV to the DVD mode. I was not prepared for my toddler to seem so advanced and not need me for what I thought was a difficult task since days before he would point to the DVD player and wait for my assistance :) At first he was not thrilled with Aiden joining our family; in fact at the hospital he would barely acknowledge me let alone give me a kiss. As we got back to home and somewhat of normal he warmed up to Aiden, and now he loves to kiss and hug him and helo with his feedings...except for when Aiden won't stop crying then he just shoves the binki in his mouth hoping for some relief. Aiden is our second blessing and just as cute as he can be! He looks just like my husband and Preston and of course nothing like me....again. I have decided that my only job is to carry them and do all the work to get them into this world and then they pop out as mirror images of daddy...oh well :) I guess maybe if we have a girl next time around that I might have a better chance of having some resemblace but that topic is still up for discussion. Aiden was born partially albino and we are in the middle of getting all of his testing done to see what all has been effected by this condition. Not to worry though it is only something that effects his eyes and skin/hair (hence the white hair) but other than that he is completely healthy! He will get to do everything Preston does just in moderation and with a little extra protection. As we get through appointments and get new information we will be sure to post it on here. Having 2 boys is a dream come true! Although our journey has had its ups and downs, becoming parents has been the most amazing experience and we are just so lucky that they and God chose us to be their parents. They are perfect in every way and whats even more awesome is that even though as parents we are to teach them things and guide them through the first part of their life till we prepare them for their adult life...they teach us so many things too about our selves and life, and for that we will be forever grateful...God sure new what he was doing..the footprints poem comes to mind when I think about that.

Aiden's Dermatologist Appointment & 1 Month Check Up

2008-08-05T15:41:00.000-07:00

We had Aiden's one month check up and his dermatologist apt yesterday, and all is well with some very positive news from his dermatologist to report!

Aiden weighed in at a whopping 10 lbs 8 oz (born just 30 days ago at 7 lbs 13.2 oz) and measured 22 inches long (born at 20 inches) and his head measured at 15 in round (born at 13 in) so he is growing growing growing! The doctor was very happy with his progress (unlike Preston who we have literally been "in trouble" with his weight since the day he was born :) But happy to report also that Preston is officially off the bottle 100% and is eating much better so his 2 year check up should be right on track this time!)

After we finished his check up we went upstairs to his dermatologist apt and his doctor was awesome! Super sweet and very knowledgeable. She said that normally they do a biopsy of the skin when people are born with Albinismsm but since he was only a month old that she preferred to wait until he was 6 months old, because she says that if he is to get any darker in his pigment (which she said was possible because as someone diagnosed albinismsm he does have a lot of pigment) his skin tone would be pretty set to whatever it will be by 6 months (just like the eye color) so we have to go back then for the biopsy. She said it is a very minor procedure and that he will just have to have 1 stitch that will be removed after 2 weeks (which I am not crazy about) but oh well. She said that the biopsy would tell her a lot about his skin tone with the amount of melinen that is actually has and a bunch of other stuff.

In the mean time she said he is allowed outside now in the later part of the day (after 4pm) in the shade and when its gets a little later like around 5:30ish when the sun is starting to dim down and set he can even have a little sun as long as he is covered with sunscreen on any skin that is not covered by clothing and just monitor his skin and if I see it getting pink go inside and not back out again till the red or pink goes away. He is always aloud outside in the the shade (so now I can take the baby swing outside in our covered patio while and sit with him there while Preston plays out side which is GREAT news since Preston has been so deprived of his back yward since we did not know Aiden's limits yet). He can also go swimming or play in the baby pool as long as he has sun screen (and we will probably put a t shirt on him fo extra protection) and a brimmed hat and sunglasses must be worn at all times out side the house. She said right now since he is litte and his time out side is limited that sun protective clothing is not required but as he gets older and after we know the results of the biopsy it may be depending on his outside activity.

Another interesting fact she told us about was that there have been some recent medical studies that show or prove that people with light colored eyes are most likely to have kadoracks when they are older due to the damage from the sun rather than people with dark eyes, (and by dark she meant brown. Preston has bluish green eyes and they are a darker blue and green but she said that his are still even too light and wants him in sunglasses too). I thought that was very interesting for us for out kids but wanted to pass that info on too.

All in all this is very exciting news for us about Aiden. It is very reassuring and settling for us. She said it is very important that we allow Aiden to do everything Preston does just in moderation and with protection so yea for Aiden! She also made sure I was breast feeding and when I told her that I was lucky enough to breast fee at least particialy till Preston was 8/9 months and I of course intended to do the same with Aiden and to a year if I was able to she was so thrilled b/c she said that whenever we have children with any special need, the mothers milk is even more vital to them that a mothers milk to a "normal" (i hate that word but just to get my point across) baby because all of the goodies in my milk will help him and protect him from his special needs extremely more than if he was not breast fed. So that made me feel sooooo good; I know how important breast feeding is but to know that it could possibly help Aiden with his albanism in some way is an even better feeling!

Aiden's Eye Appointment

2008-08-05T15:33:00.000-07:00

As you should all know by now, Aiden was born with Albinism and we are still in the process of figuring out to what degree and what is going to be required of us to take special care of his specific needs.

We had his pediatric ophthalmologist appointment on wednesday, and for the most part is went well. It was a little scary at the beginning because since he is so little they had to put these contraptions underneath his eye lids that pulled them open and held them open so that she was able to do her exam. I could not watch but Dave did. I just help him and he let out this horrible scream (but she said it does not hurt them just irritates them) that made me cry too. After she completed his exam she confirmed that he does have Ocular Albinism. (Its a little difficult to explain so I included some information I found about it at the bottom of the email to make sure it;s explained correctly). We do have to be careful with his eyes until he is mature and responsible enough to wear contact lenses that are tinted and designed for people with Ocular Albinism. he will have to wear sunglasses at all times when out side.

She said that sun light is the only kind of light that can do actual damage to his eyes but other lights like camera flashes do not harm just irritate him. His eyes also do a little of the shaking that it talks about but its nothing significant yet. The doc said that the jerking of his eyes could stay lie it is (not very often) or it could worsen with in time. Its really one of those "only time will tell" situations. In some rare cases the shaking is so bad that they are not allowed to drive but in most cases with glasses they are fine. Our main concern with his eyes at this point is the shaking and hoping that it does not get any worse...somewhat for the driving later on but mainly because if the shaking increases it can make it hard to focus and can effect the nerves in his eyes that transmit what he see to the brain so it can cause some delay in learning but we will just pray for the best and learn ways to make his eyes strong. With all the love and support we have been blessed with from our friends and family and our higher powers I am confident that he will be taken care of, and that what ever comes our way we will cross it together as a loving family. As far as we are concerned he is just as perfect as they come!

Aiden is scheduled for his one month check up and his pediatric dermatologist appointment on Monday, July 28th. His hematologist appointment is scheduled for August 5th, and then finally his genetic testing on August 14th. After each appointment we will have more information and will keep the updates coming. Our Pediatrician is still confident that he is only partially Albino (meaning only his eyes and hair) because his skin has so much pigment but the dermatologist will give us a better diagnosis on Monday.

Below is some inforamtion about Ocular Alinism incase you want some clarification :)

What is ocular albinism?
Ocular albinism is a genetic condition that primarily affects the eyes. This condition reduces the coloring (pigmentation) of the iris, which is the colored part of the eye, and the retina, which is the light-sensitive tissue at the back of the eye. Pigmentation in the eye is essential for normal vision. Ocular albinism is characterized by severely impaired sharpness of vision (visual acuity) and problems with combining vision from both eyes to perceive depth (stereoscopic vision). Although the vision loss is permanent, it does not worsen over time. Other eye abnormalities associated with this condition include rapid, involuntary eye movements (nystagmus); eyes that do not look in the same direction (strabismus); and increased sensitivity to light (photophobia). Many affected individuals also have abnormalities involving the optic nerves, which carry visual information from the eye to the brain. Unlike some other forms of albinism, ocular albinism does not significantly affect the color of the skin and hair. People with this condition may have a somewhat lighter complexion than other members of their family, but these differences are usually minor. The most common form of ocular albinism is known as the Nettleship-Falls type or type 1. Other forms of ocular albinism are much rarer and may be associated with additional signs and symptoms, such as hearing loss.

How common is ocular albinism?
The most common form of this disorder, ocular albinism type 1, affects at least 1 in 60,000 males. The classic signs and symptoms of this condition are much less common in females.

What genes are related to ocular albinism?
Mutations in the GPR143 gene cause ocular albinism.
Ocular albinism type 1 results from mutations in the GPR143 gene. This gene provides instructions for making a protein that plays a role in pigmentation of the eyes and skin. It helps control the growth of melanosomes, which are cellular structures that produce and store a pigment called melanin. Melanin is the substance that gives skin, hair, and eyes their color. In the retina, this pigment also plays a role in normal vision. Most mutations in the GPR143 gene alter the size or shape of the GPR143 protein. Many of these genetic changes prevent the protein from reaching melanosomes to control their growth. In other cases, the protein reaches melanosomes normally but mutations disrupt the protein's function. As a result of these changes, melanosomes in skin cells and the retina can grow abnormally large. Researchers are uncertain how these giant melanosomes are related to vision loss and other eye abnormalities in people with ocular albinism. Rare cases of ocular albinism are not caused by mutations in the GPR143 gene. In these cases, the genetic cause of the condition is often unknown.