Baby Steps

Thursday, January 9, 2014

Evan and Piper updates

Well I am officially sick of being pregnant! I am 39wks and 1 day and carrying a very big baby boy. He is measuring at 8lbs 8oz and could possibly go two more weeks. His due date is Jan 15th and we have a Csection scheduled for the 22nd. I am going to attempt a VBAC but if he is not here by next week we will consider moving the surgery because I am not sure I will able to make it two more weeks. I have been in a lot of pain the past couple weeks so the sooner the better. Overall, this pregnancy has been very easy up until recently so I can't complain much. We were able to see his little face yesterday and I think we are going to have another Justin look alike. We are so excited to meet him and hopefully something will happen soon.



Piper is doing well too. She has been on Charlotte's web since October 24 and we have seen positive results. She is still having seizures but they have reduced in frequency and severity. In July, before we moved here she was having 2-6 clusters of spasms that would last up to 15min each. In the past month she has consistently had 1-2 spasms a day and some days she hasn't had any at all . She has single spasms that last about 3-5 seconds and do not really bother her at all. She has had many days with 3-5 single spasms only. On these days when she only has a few single events she is only seizing for up to 25 sec! She has very good days and only a few "bad days". Her bad days do not even come close to comparing to what we used to see. She recovers so much faster and a strong cluster will not wipe her out for the day.


The most interesting and surprising thing we have seen since we started treatment is her overall health and well being have improved drastically. Before we moved she averaged 4-5 hours a sleep at night, not consecutively. She would sleep a couple hours, wake and have seizures, sleep a couple more and seize again. She never got a good nights sleep and was tired all the time. Now, she is consistently sleeping through the night and if she wakes she is able to get herself back to sleep! She is sleeping up to 11 hours a night without seizing!! I can't explain what a huge deal this is for her. In my opinion sleep issues have always been second to seizure control and this change is unbelievable. She is cutting three teeth right now and is still able to sleep all night. When we moved here we said even if this medicine helps her sleep better it will be worth it.

Her cognitive, physical and visual functioning have also improved in a short time. She is moving her body more and using her arms and hands. She has always had issues with using her arms and hands and has never really used them. In the past two weeks she has used her hands more than ever and has started reaching out for toys etc. She has learned things that we have been working on for years in just a few weeks. Her brain seems to be making better connections and she is able to learn new things. Her muscle tone has also improved. She is almost sitting independently which she was not doing before the move. Her whole body has gotten stronger and continues to do so. Her vision has improved and she is attentive and alert. She can focus on toys and interacts like she never has before. She is vocalizing more and has started making the "ma" sound. She has actually said "ma ma" but doesn't do it purposefully. It is still exciting to hear her making new sounds. All of the changes in such a short time are proof to us that this treatment is helping. We have worked on many of these challenges since she was 6months old with no progress and suddenly in 2 months she is able to do them all. It is truly amazing!





So with the evidence of how this treatment is changing her life we have decided that we will be staying in Denver for as long as it works. We have started looking at neighborhoods and houses in the area because we are quickly running out of space in our apartment. We really love it here and it feels like home. We miss everyone very much but are very fortunate to have family and friends that can visit.

6 comments:

  1. This just brings me to tears! I am so happy for you and so incredibly amazed at how much she has improved since the move. What an amazing God we serve! So happy for you guys and can't wait to see little Evan! God bless you Koozer family!

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  2. Great news!! Sending more happy healing thoughts from TENNESSEE! Maybe it won't take too terribly long for our state to come to its senses.

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  3. From Mark Dobbs - Wow, great news about Piper. Hang in there.

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  4. Such wonderful news!!
    Maryalicia

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  5. I'm so happy for you guys! I hope that this becomes an option in Florida - SOON! Dakotah's seizures ALWAYS happen at night after she's fallen asleep - she will startle awake and go into a seizure. If she could sleep better, then maybe she wouldn't have the seizures! Yay Piper!!!!!!

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  6. Yay Piper! I'm so happy things are getting better for you! You are all so very brave!

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