Mikaela, Mikaela, Mikaela

What can I say she is a nut. That girl is a different animal everyday and changes animals through out the day too. She keeps me busy and her sister too. Mikaela is doing well in school but hates it, so she says. She actually told me that I hate her and that is why I send her to school. I have a feeling her school career is going to be a long one.

Mikaela is taking Gymnastics on Friday nights and loving it. We just signed her up for ALL Sports. She will get to try a new sport every Sat for 8 weeks, we hope to find Mikaela's forte and choose one for the summer.

Over the past few months we have been working with K about strangers, telling the truth and lies. Well, she gets the don't talk to strangers but apparently Mommy isn't allowed to talk to anyone else either. The telling the truth part well she has confused. Mikaela likes to make up stories on how thing happen and then tells Me to tell the 1st and 2nd truths on how it happened. Example: if she tried to take her sisters cherries and gets caught, she will try to say Molly took her cherries is only taking them then tells me to stop lying and tell the truths the 1st truth and 2nd truths, that Molly took them. Matt and I have the hardest time keeping a straight face even wither her fake crys. Gotta love her!!

Lots of posts

makes sure you check out all the posts I have in Feb. I am posting a lot of Pics so you may want to scroll down a lot

Molly's Equipment

News on Molly

Well we are just about finished with new doctors and appts. Life can return to normal routine again. Molly will be recieving a few pieces of equipment this week to hep with support and training her body. since Molly is 1yr and not craling we need to address her as she ins now and not in the future. This doesn't mean we will have equipment for the rest of our lives.It just means for the time being to help train her body to use her muscles to get into those positions
1. Hand Splints to help her thumbs stay in the open position (Pic to come)

2. An adaptive stroller. This stroller has supports in place to help Molly sit up straight and keep her in better position over all. Huge difference when you see her in it compared to a regular stroller. The biggest thing is it will keep Molly from slumping and leaning to the side to avoid curvature of the spine.

3. Stander : a different view an position so she isn't always lying down or sitting. She gets stiff if she sits to long. below I added a few benifits of a stander
Description

Standing is an integral part of many developmentally disabled children’s rehabilitation. Standing provides an alternative for positioning and pressure relief for those who use wheelchairs.
The Benefits of Standing

• Improved bowel and bladder function.

• Enhanced respiratory function.

• Increased endurance.

• Reduction of pressure ulcers.

• Prevention of lower extremity contractures.

• Lower extremity weight bearing improves and maintains bone density.

• Improvement of circulation.

• Strengthening of cardiovascular system.

• Facilitates development of appropriate alignment of the spine, hips, knees and ankles.

• Improves social interaction and self esteem.


3. AFO ( ankle foot orthotics) They are legs braces that will give Molly more support then a pair of orthotics. her bones are soft and muscle are weak because she doesn't get to use them. This will give her support to stander longer and better. I will post pics once we get them .

eventually Molly will be receiving a gait trainer and a walker but that's a long time down the road.

Molly is doing well. With our help she is able to sit with minimum support and again with support she can be placed on her hands and knees. She will rock and sometimes reach for toys in that position. She has begun to feed her self with a spoon. Big mess but she loves to try. She likes to turn the pages during story time and fusses if the book isn't closer enough to reach. She will bare weight on her legs and even lift her right foot to step if you move her left foot first. we are very excited that she is showing signs to want to move her feet but the PT pulled the reins in. She wants us to refrain from her standing to long and stepping just yet. Molly has to learn everything in order. Molly has to reach all her milestone as they are in the books. Each one is vital for her to learn for brain development and safety reasons. If you think about it , it makes sense, if she learns to walk before she learns to pull herself to sit or crawl, can cause problems. For example if she walks and falls she will not know how to get back up. She is makes great strides it is just slow and that is okay. Some kids can skip crawling but in Molly's case it is vital to her own safety and development.

Molly loves music and will bounce if she hears a song she likes. She also has a new sound with is a hard one."Ga Ga" Everything is "Ga ga" Just put her in front of a mirror and she will chat your ear off.


I posted a few pic of something similar to what Molly has for equipment. They are not exact. When I get all of her equipment and bracing in I will post her in them so you all have a better idea.

I cannot think of anything else for now. I will be just posting past pics of Molly and Mikaela from xmas, birthday and random stuff.

Just posting pics

I am so behind that i am just posting Pics right now.

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.