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Showing posts from March, 2011

Evaluation day!

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Today was the day we had Willow evaluated so that she can start to receive services such as occupational therapy, physical therapy, etc.  Really for her age now, it is considered play therapy!  I am really trying hard to remember the "label" they have just given Willow.... after research online (gotta love that!) I have found the answer! LOL  She has just been "labled" with:



Other health impairment (OHI)A disease or health disorder so significant that it negatively affects learning; examples include cancer, sickle-cell anemia, and diabetes.
http://www.education.com/reference/article/IDEA-disabilities-categories/
Basically she has delays (we knew that) and right now they are delays because while she might be able to follow a toy from left to right one minute, she can not do so reliably. And that is how she is over all delayed as well, she does not lift her head reliably or consistently, she does not reach for toys (mainly due to her visual delay). So, while she seems t…

The first of many...

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Today we had Willow's opthomology appointment. It took quite a while as they were running behind, but eh, whats new?!  So, the short of it all would be this:  She does have visual delays, albeit small right now but none the less delays.  She also has a stronger vision than most kids her age. She is a +5 in one eye and a +4.5 in the other (not sure what that really means in technical terms until I speak with my sister in law), but it boils down to her needing glasses.  So we have an appointment in June where we will discuss that.  For now, we must work on visual therapy with her (that will be set up tomorrow with Ken-o-sha).

The other good news about today's appointment is that we found that the optic nerve is just fine!  It is not being affected by the hydrocephalus (or hydro as you may see it in future posts), and her eye muscles are in wonderful condition as well!  So any further delays she may have will be because of the lack of brain matter and the lack of connections tran…

Facing the truth...

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Well, over the weekend, I got the chance to visit with many friends, it was so nice to see them again on Sunday & Monday!  Sunday I saw another little girl, born only 3 days after my Willow. I have to say though that little girl sure did sit quite well, and hold her head straight, and was very alert and interested in toys & things around her.  My Willow is not there yet, and well, it was difficult to finally face what my little girl can't do.  Yesterday I pulled out the other kids baby books and realized that they all rolled over by 3 months from belly to back, and had giggled.  We have yet to hear her giggle while she is awake.  I know we are working on Willow time (as we call it now), but it took me a day to become okay with it again though.  I just have to remember we are working on one day at a time.

Tomorrow we have her ped. ophthalmology appointment, to get a baseline of where her vision is at now.

For now, we wait again.

A nice change

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I decided to change up the design on my blog. I do that every so often. Change can be a wonderful thing. I chose the rain this time not because I am drowning (though I suppose I do have those feelings on some days), but no I chose rain today for its refreshing quality.  The rain calms me, I love a good storm.  To watch the clouds roll in, hear the thunder... yes I still count each Mississippi between the thunder and lightening!

The other night we had a few nice storms rolling in, and I had the urge to go out and soak up the rain and enjoy the thunder.  I wrapped Willow up into a towel, zipped up my hoodie to the top, and after slipping my shoes on, stepped outside.  Jon was there smoking on the porch, and he asked me such a silly question, "Are you running away?"  Yes Jon, with a baby in a towel and no coat on my back, I am running away... Silly man.  No I instead went outside to breathe in the rain, thankfully it was not raining hard yet.  It was the best first day of Spri…

A real term for it...

I took Willow in to the pediatrician as Strep throat/Scarlet Fever is running rampant in my house, and she has had a cough/congestion since Friday.  Well guess what?!  It is normal baby congestion!! Yes folks she can have normal baby problems too! LOL  I make light of that because well it seems silly that I took her in for normal congestion, but hey when her chest rattles at night you never know!  But again just normal congestion.  Since the other kids were all in other places (school or home with dad), I was able to finally have a sit down with our ped. to discuss what is up with Willow!! Wow a real face to face conversation.

Well the true diagnosis is:  Hydrocephalus ex vacuo.  Here is a link: http://www.medterms.com/script/main/art.asp?articlekey=8634

The important part from that page is really this: "Hydrocephalus ex-vacuo:What is termed "hydrocephalusex-vacuo" occurs when there is damage to thebraincaused bystrokeorinjury, and there may be an actual shrinkage of b…

Letter in the mail, and phone calls made

Well yesterday was Friday.  I called the neurosurgeon to see if we needed to follow up with him, and was told no, she does not need surgery so we are being referred to someone else.  Good news!  I called Ken-o-sha to see what was going on with a home worker, and the main office sent the intake papers to another location closer to my house, called the Wellerwood Center, and they should be calling me early next week to set up our first appointment for home evaluation.  Good news again!  So we still will see the pediatric opthomalogist at the end of this month to see if there is anything wrong with her eyes, and we are just waiting for news from the pediatric neuro-developmental specialist.....

Well that news came today in the mail!! The pediatrician warned us we may need to wait to get in to see her, as right now there are not too many milestones for Willow to miss.  So, the note says our first appointment will be with Dr. Nancy Dodge (a partner of the dr. my pediatrician was saying we …

It's been a few days....

A few days have gone by since we were told the news of our daughter, Willow.  We have been able to process the information and have come to terms with what our life will possibly entail.  But you see, it is just that a possibility.  We really do not know how delayed she will be and to be upset about what she may not be able to do is not how we want to spend our lives.  She is adorable, she smiles, she coos at you all things a baby should be able to do.  Yes, she will be behind on rolling over and possibly walking eh she's alive!  And that should be celebrated.

There were many things that made this pregnancy not easy, and while delivery went smoothly it was on the 24th of December.... A day I never wanted to have a child of mine born on!  LOL   But alas, we have been given a gift for I am sure, many reasons.  I want to thank everyone for their support and prayers through all of this so far, it means so much to all of us.

Willow's MRI results

So I of course called first thing this morning to see what the missed call was about.  The pediatrician was busy already with patients, so the nurse pulled her file and told me this:

there is a significant loss of white matter,
there is no evidence of pressure yet from the fluid
She was born with hydrocephalus
we have to call Early On to schedule an appt. with them
They will have the neurosurgeon review MRI as well to make sure surgery is not needed at this time
We will be referred to a pediatric neuro developmental specialist
.
.
..

..
brief interruption the pediatrician just called!! So this is what she is saying:
Willow's ventricles are enlarged and taking up space but not causing pressure and the reason there is no pressure is that her brain is not developing as it should.  Both of her hemispheres and the corpus colostrum (the layer in the middle that connects the two sides) are smaller and thinner than should be.  So there is excess fluid in her brain but because brain is sma…

The sun has now set...

It is evening here, and while the house should be quiet... the older 3 children have not gained the understanding that it is bed time after I tuck them in. Ahhhh a normal evening in the West household. LOL 
The MRI was today, yup we managed to keep Willow awake from 10:30 am to 2:50 pm!  It was not easy either, the last time she ate was 11:20 as well, and I could not feed her until 2:40 pm!  Oh the agony on all of us. But to spare those horrid details, we were told to be at the hospital at 1:45, and yet something happened to where we didn't get her in for the MRI until 3:15.  :(   Thankfully she did sleep through it and we do not need to wait for another day to do it again.  At the end, the nurse said we would have to wait 3-5 days for the results, and while I really thought it would be quicker I just made myself be okay with that.  
So, we carried on with the evening, and I took the kids to Burger King. After dinner I happened to look at my phone and realize how much I hate Sprint …

It's still morning here

Well, she woke up and now I must keep her awake and not feed her again until we get to the hospital.  I am already a nervous wreck and I think now its not because of what we will find out, but instead, will today work? We are doing a feed and sleep MRI, basically I can not feed her 2 hours prior (minimum) before the scan, and I must keep her awake so that she can arrive very hungry and very tired.  What we want is that she will nurse and then sleep through the MRI.

I am hoping and praying on all things available that today works.  If it does not, we must wait until she is older and sedate her (meaning a scan next month).  I can not wait that long, and I am not sure if she can either.  They say it isn't an emergency, but really???

We have to arrive at the hospital at 1:45, so I am guessing the scan is either set for 2 or 2:30 today.  My kids school knows that I may be a few minutes late picking them up depending on how long this all takes since it is a 1/2 hour long scan.  I can n…

The head tilt that started it all.

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The turn with the seasons....

Okay lets see here....  For the last month or so we have noticed that Willow will tilt her head to the right in a very obscure manner.  I meant to bring it up to the pediatrician once, but we were busy discussing the reflux issue at hand.  Well 2 weeks later we were back at the peds office for her 2 month check up, and if I didn't share those results, she was well!  10 lbs. 10 oz, 24" in length.  It was at this appointment that I remembered to bring up the fact that she tilts her head weird.  So, the doctor looked at it, and ruled out that it was due to any type of pulled muscle.  So, she suggests we run a head ultrasound just to rule out the obscure.  I of course agree as it seems as if nothing is wrong, and we are just going to make sure it is nothing serious.  So the ultrasound was set for Wednesday, March 9th at 1:30 in the afternoon.

It was a beautifully sunny day, I was in good spirits as was Willow.  I have to say that the new children's hospital is quite amazing! …

One Proud Mama

So, I was a nice mom and took my kids to the school Chuck E. Cheese night.  But that is not anything that made me proud (though Mandie did get along so well with her best friends!)  When we got home, I fed the kids (they refused to eat while there for some strange reason); and then while they were doing bath/reading/quiet time, I went through their backpacks and found not one, not two, but three notes (one for each child) that they earned enough Palmer Paws (meaning they showed great character traits) and were able to go to the Palmer Paw celebration!  Now, Jonathan has made every one I believe for a while, he is a good kid.  Evan is a good boy as well, but he is quiet at school and so it goes unnoticed.  Mandie is loud and I am shocked she earned her paws!  But they all get to go!

I could not be more proud of my children.  I am glad I took them out tonight, they earned it and I did not even know it yet! LOL

Two months already

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Well, I am a few days behind (more like a week, but really, who's counting?) Willow has reached the 2 month age! There are things that by now she should be doing, such as following us with her eyes if we move our head from one side to the other of her; but she does not. She should also be batting at toys or objects that are in front of her, she also does not do that. She also can still go crossed eyed and the pediatrician says she should not be doing that anymore. But she is now 24" long, 10 lbs. 8 oz. and if I recall her head was 40 cm.! So she is growing quite well. She is still my nursing champ too, she has not had a single drop of formula and I am very happy about that! We are also still cloth diapering so it is a whole new experience with this baby!
I have also had the other kids conferences within the last couple of weeks, and they are all doing excellent! Mandie is "a blending fool" according to her teacher, which means she can stretch out all the le…