We have a Diagnosis!!!!!!!

Hold on to your seat...... we have an official diagnosis for Molly's delays

Molly has a complete Ageneis of the Corpus Callosum. c-ACC

In general She is Missing the largest piece that connects her right and left hemispheres.

At 4 weeks gestation the corpus Callosum just never developed but everything else grew just fine around it. Sometimes other issues can follow lesions, cysts other brain abnormalities, Hydrocephaly

( fluid on the brain) . In Molly's case it is showing up as a physical delay and a slight cognitive delay. Other things might soon follow but only time will tell. Absolutely nothing could show up and she could just be a bit clumsy. We hope for the best

At 9 mos old Molly was physically 2 mos and 5 mos cognitively and now at 1 yr she is 4 mos physically and 9 mos cognitively. SO, with that being said Molly is progressing great and that gives us hope that she just might catch up and lead a relatively normal life. Not saying we could also have a few bumps in the road as she grows but she could she could leave those bumps behind her too.

To learn more please google it please us the websites I have listed. It is a 1% chance that this can happen to anyone. For all you know you could be missing your Corpus Callosum.

use

webMD
www.nodcc.org

or my new fav ( read the underlined headings)

http://scenicbeauty.tripod.com/AngelsAroundTheWorld.html

these sites can explain so much more that I have the patience to type out

In short: Keep in mind this can range from mild to moderately severe
physically delayed gross and fine. Social,Emotional and Behavioral and
possible learning delays. Other syndromes can follow but like I said only time will tell.

Molly also has Mircocehpaly which means small head. Her head growth is slowing and they are watching this carefully. Her brain has plenty of room to grow though. Only time will tell us about this too. She will be watch carefully for serious eye problems and hearing difficulty. Right now she just has weak eye muscles ( strabismis) and her hearing is fine.

Because this is a mid-line birth defect Molly has to be watch for other issues with her heart, lungs and other parts of her body that grew from the mid-line. So far nothing has shown and it seems that she is healthy otherwise. She is at a higher risk for seizures but any child is ; she just has a higher chance because of the brain Abnormality.

It's nice to have an explanation but at the same time of hating this it is also comforting that I am a special needs teacher/with experience and knowledge of speech and hearing ,behavioral and social emotional,and that I have worked with children with all these issues before . I don't know everything and I didn't go to school just to have my own child have something of this nature. Still trying to come to grips with this, even though it could mean she could lead a normal life and show no signs of problems from this birth defect.

Please don't be afraid to ask about Molly and Mikaela of course. I will try to blog on the 15^th of every month now about Just Molly but on the first about Mikaela and our family happenings. I won't torture you with two sites about the family. Even though I am still entertaining the idea of giving Molly her own blog with a specific title so other families can find her story and read about our experience with C-ACC. I know I am finding it nice to read and see how others are doing with their child and adults that have lived with this their whole life.

Molly now does:

She waves Hi and Bye

Gives kisses when asked

shakes her head yes and no

uses her eyes to tell me what she wants

reaches for things almost pointing

sits with support but loves to fall over to get to her tummy and tries to lift that butt and bends legs as if to crawl

eats age appropriate foods ,no worries on eating issues beside her high palate

( which is a mid-line thing, she could have a clef palate we don't see but I don't think she does. My pallet is higher then normal too so it might mean nothing

LOVES her books

Language is Molly's strongest asset right now.

Oh yeah she is the Happiest Baby I know!!!!

We have to make her aware of her body so she can learn that when see sees something she wants to do or grab she can learn the physical action with the thought and connect the two.

We have everything in place already to help her succeed and that's all we can do.

We are currently in the process of researching equipment to assist her. She might not need sitting or standing equipment for her entire life because she is showing great motivation to do those things.

So hopefully we can borrow equipment before getting the insurance to pay for it. If we do have to purchase equipment we are entertaining the idea to donate that equipment to the local Early intervention program for others in the area to borrow or create a borrowing program for equipment for special needs. I know I don't want to store the equipment she grow out of so why not pass it on to another child who needs it.

Please don't hesitate to ask email or FB me about Molly and please book mark our blog and follow Molly's successes.

There is so much more I can say but the websites and links on those site I provided have everything I can possible tell you about it.

Matt and I are doing ok. I feel like I have been side swiped but time will get me through will get us through this. We are fortunate enough that I can stay home with the girls. This makes things a bit easier with all the Dr's appt and therapy Molly needs plus time with Mikaela.

Thanks for reading......

Molly is 11 months old!!

Molly is 11 mos old

Molly is doing well. She is beginning to sit with support better and managing to sit with out support for a short period of time. She is very proud of her self. She is feeding her self crackers and just today she is grabbing her special sippy cup and able to hold it up for a short time to feed her self. Molly is no longer on a bottle she is using a transitional sippy cup. It has "D" handles on it for easy grabbing and a longer spout to help transition from a bottle to a regular sippy cup. Molly will still take a bottle but she would have to re-learn how to suck from it again. Molly has a very high pallet and combined with poor oral motor skills makes it difficult to suck. She was a great nurser, but she would nurse for an hour each feeding and finding a bottle for her was a challenge too. Molly was able to learn to take the NUK bottles and now the Born Free transitional Sippy cup. She is getting better at grabbing things with her hands and holding her head up so much better.

Molly is moving her body much more and definitely trying to sit up by doing little crunches; She defiantly wants to do it.

Molly is still extremely happy and tolerant of her therapies. Even cutting teeth and more then one tooth, she is doing well and smiling while do it.

Speaking of teeth: POOR POOR MOLLY! Molly is cutting 5 teeth all at once. Yes people, I said 5. She has done this before but this is a record. Molly has her top 4 front teeth and 3 bottom. She is in the process of getting her first year molars and the 4th bottom lateral front tooth. I believe there might be a 6th tooth in there working its way in too. I can clearly see the outline in the gums of all four molars. The gums are tearing from the centers of the molars. This is causing a lot of pain for Molly in the middle of the night. The maximum dosage of Motrin, piggy backed with tylenol, 3 hours later, isn't cutting the pain. She grinds her teeth and tries to gnaw on the edge of her highchair tray because she cannot get a good grip on teether toys and get them in her mouth to chew on to relieve some of the pain. Those darn hands!!

Today I was able to look in her mouth and see that the bottom molars are tearing through the gums first and the bottom front lateral tooth is too. The top molars are starting to tear through and the eye teeth are showing their outline in the gums as well. She is going to have all her teeth by her birthday at this rate. Because of all these teeth I have given her the Nick name Chick-a-lette. Her teeth are so big compared to her sister's teeth.

Molly gives good kisses, nice and wet when asked and she also most definitely waves Hi. She is at 4-5 month milestones and progressing.

We Saw the neurologists a few weeks ago and She saw nothing alarming with Molly but if something is there, only time will tell because her nervous systems is still maturing. The Neurologist had blood work done to check for Metabolic disorders which she thinks is not the case because Molly is growing to well for that. We have a MRI this week to look at her brain. We also saw the orthopaedic last week and was prescribes hand splints ( I will get into more about this in another post)

We are waiting on our appointment to the Dr. of physiology and rehabilitation and the Developmental pediatrician. I am curious to what they will find if there is something. The one thing we do know about Molly is that is is significantly delayed but progressing and that's all that matters right now.

I do have to say it is very hard to have 1 year old that is not doing what I expect a 1 year old should do. I feel like I have had a newborn for a whole year. Many of my friend's Babies who have been born months after Molly are passing Molly by and it is hard not to feel heart broken. However, I feel that everything happens for a reason. I do not know what that reason is yet but I know I will learn it soon. I tell myself maybe it is Gods ways of saying I am done with having babies by giving me a newborn baby longer then expected, hoping I will not want to do the new born baby thing again. (Not sure about that, yet) I don't know why Matt and I were given this challenge but we accept this challenge and will make the best of it. Who could resist this challenge with that face and those cheeks. She is just so Sweet!!

When I am with Molly it's just Molly; I don't know her any differently, it's with out her I see everything she is not doing. She is going to be one and yet it doesn't feel like it is time for her birthday yet. It will be 1 year since she entered our lives and we cannot imagine it any other way.

The face of Molly looking like she is saying ooo. That is her new and favorite face. She makes this face all the time. It is the cutest thing ever.

Halloween!!

Mikaela had a wonderful time at halloween this year. She actually understood the whole idea of halloween. I was so excited!! My excitment didn't last to long because my own little medium sized girl told me after about 4 houses that she was going to do it by herself. BY HERSELF!!! I was so proud but bittersweet at the same time. She went to the door rang the door bell all on her own and said trick or treat and thank you. Awe!!! We told her about which houses were the ones to go to and after about 3 houses she was telling us which houses to go to. the ones with teh lights on and Halloween decor.

This was Molly's first Halloween. She just hung out in the stroller and loved watching all the the kids and the lights.

Both girls got pretty wet as well as Mommy and Daddy. Thank goodness it was a warm fall rain. The girls had a nice dry stroller with an umbrella, between houses. Mikaela brought home a decent amount of treats. I tried to convince her that if she traded in all her Halloween candy to the Trick or Treat Halloween Fairy she would be given a speical toy. Nahh!! was her answer. I want to keep my treats. Daddy loved her answer. Oh well I tried. Mommy and Daddy have eaten most of the girls candy anyway.

PRESCHOOL!!!

Mikaela started preschool last month. It was a rough start for her. Her first week was fine , she went willingly and never looked back. However, her second week well not so hot. She made it very heartbreaking for Mommy. The teacher in me knew she would be fine and each time I walked out without looking back. She definantly showed the teachers and staff what she is made of especially, her lungs. After about two weeks of crying the whole way to school, she is starting to except school. Slowly she is begining to talk about things she does at school and remembering other kids names. She has her own fan cub. When we arrive, the kids all yell her name and come running. They help her get ready to leave, fold up her blanket and get her bag . The kids are very cute. She leaves earlier then most of the kids do. Last week she would get upset when I got her dressed to leave, but then her attitude change to happy to go but still no smile. She is liking school, so she says, but tells us she has a horrible, terrible, no good bad day. She wants to be home with Mommy. I am hoping this week goes better for her. She wants to like school but wants me to stay to play too. I would love to but on the days MiKay is at school I am off with Molly to her playgroup at the Early Intervention office.

She did not want pictures taken.

10 Mos and more.... October

Omgoodness!! Molly is 10 months old

Lost to tell where to start. Molly has woken up so much it is unreal and so relieving. Molly has now made it to 4-5 month mile stones, a few still to be desired but she is moving her legs and her arms and talking up a storm. So Much that Mikaela tells her to be quiet. We think she said her first word and I am counting it."ba ba" When she was asked twice on two different occasion for a Ba Ba ( bottle) she said " ba ba , ba ba, " and got very excited as if she was shown her bottle. That is a huge step for her.

We have begun Physical Therapy and Mikaela has begun Preschool but that is for another spotlight all on her own.

Molly now grabs toys on her highchair, not well but she is grabbing at toys and bableing the typical words an 8-10mos should ma ma, da da and ba ba. She is eating at age appropriate standards for 10 mos. However we are still feeding them to her. Picking up things is still a challenge for her, even toys are a challenge. Her hands are still tight and fisted on some day but for the most part with massage and EI she is leaving her hands more open. We are exploring the hand issues a little more with the OT ( Occupational Therapy)and the Orthopedic. Molly is interested in the sippy cup but getting it to her mouth and drinking from it is another challenge but she is attempting it which is what we want to see. Toys are finally going to the mouth too. Mikaela yells at Molly " no no no..... not in your mouth Molly" which is so funny to hear from her sister. We tell Mikaela all the time get it out of your mouth and now she is passing that on.

Mikaela takes care of her sister very well. It's great to see this because Molly just adores Mikaela. Evene if Mikaela sucks up all the attention with her koo koo monekyness.


Molly is begining to enjoy bath time a bit more and is splashing a bit. We are explorering bath seats so we can ditch the infant recline bath seat.

Molly is showing typical shyness of new people wither with a big lip and cry or hiding her face in Mommy's chest and then she look sat me to check if it is ok. So cute! Her personality is finally showing through. I almost feel that we hit that big awakening week; 20 weeks, when all babies seem to come in to their own and wake up from the fetus stage. I feel we hit it. It was like Molly was a 2mos old for 9 mos of her life. We feel better about her development progressing but we have a long way to go. She is still 75% delayed but progression is taking place FINALLY!!!!!!

I am still broken hearted by all of this and So is Matt but rightfully so. However She is so happy and so sweet that she will be great someday and all of this just means that Mommy and Daddy will be Molly and Mikaela's biggest supporters in everything they want to do and think before we say no because, life is so precious. We might hold on to the girls a little tighter but who wouldn't.

I feel that this whole situation is making me stronger and better at what I do as a wife, mother and woman. When I return to teaching and the special needs population, I will be more fine tuned than a clock. Everyone thinks the teaching I did was just reading , writing and arithmatic but it was way more; it was... "Super Nanny" bevaiour specialist for those who needed help with their anger and frustration, a subtitute Mom for those who didn't have any kind of parent, a Therpaist to continue on what the therpaist planned for my students and so much more besides teaching.

Molly has gained so much since we started EI ( Early Intervention) I look foward to so much more progress. slow but steady she will get there.

Molly's Progress

Here is a short update on Molly's progress....

Now some of you haven't seen Molly in a bit and don't expect to see the huge difference in her that we do but it is huge. It shows up even more when you put her in a room of babies on track. It didn't hit me until I was at a play date and the baby girl who joined our group was 7 months old. I knew she was behind and something was different from 3 months old but it really was obvious after that.

Now you can all tell me, that all babies develop at their own pace and I understand that. Molly is so different. She is so happy and just so content with who she is that it makes it easier to deal with the delay but it still hurts. It is still weird on how far behind Molly really is.
Early Intervention says she is (30% percent)
Meaning Molly is behind 70% from age appropriate behaviour in babies her age. I cannot check off on the list of milestones for anything for her age. With Mikaela I could always check off one or 2 out of a list of 10 things. Molly is still at 3 mos old.

Enough of her lack there of ,lets celebrate her accomplishments thus far.She us going to EI and Chiropractor. I do have to say that with each visit to Dr. Bear the Chiropractor Molly does something new. After 2 visits to Dr. Bear Molly jumped in the jumperoo. She never ever jumped or even tried to prior to her adjustments. Molly also began to babble ,ma mas, ba ba, and dadas.

With a daily massage Molly now opens her hands so much more then before. Which was barely and when we did pry her hands open she would cry. Molly tolerates Little Gym front rolls so much better , maybe because her hips are lined up correctly now and it doesn't hurt.

Who wants to move when they are so tight it hurts. Just imagine waking up with a stiff neck and having to move it before you stretch. Molly's body is like this all over. Molly also is doing so much better with doing mini push ups and turning her head. Molly was never able to cuddle as an infant. Molly never slept on her tummy on our chest because she couldn't turn her head. Well recently after therapy and Chiropractor started she can. Not alot but she is able to turn her head more and cuddle before bed time with Mommy or Daddy. Tummy time is so much easier now that she can look to the side and not have to worry about being face down in her own drool.

Molly tried to push her rattle on her high chair tray to her other hand and then tries to hook the rattle with her open fingers and shakes and bangs it. She also reaches for toys now on her tummy and food from Mommy's hand. She can recognize her bowl and spoon and tries to grab it, well, fists it's. Her hands are mostly fisted but if they are open it's because she is not tired or had a really good massage the night before.

Just these little things are huge for her but we still have a long way to go.