One's Trial, Someone Else's Testimony

I know I usually don't post twice in one day but I just had to share this with you all! I have said it many times before, one's trial may be someone else's testimony. Often we don't go through things for ourselves so much but for others. And from the start I felt that is the case with Isaiah's situation. I truly believe we are going through this to help others, whether it is by simply raising awareness and hopefully money that will fund research, scholarships and equipment for stroke survivors. Or even by giving others who have been affected vital information and hope that their child can recover and do well. The latter was the case today! A friend of mine contacted me today, her daughter was diagnosed with Pediatric Stroke today. She had it in utero, years ago but they just found out. When we talked about things that indicate a stroke in an infant she was surprised at how many indicators had been there but she just never knew they were signs of a stroke. I remember when we first learned that Isaiah had a stroke. I searched the web and had a hard time finding sufficient information. I often felt so lost, not having anywhere to turn. Thankfully, I cam across CHASA. Nancy from CHASA introduced me to different Facebook groups for stroke survivors and their families. i am so glad that I could pass all that on to my friend! One less thing she has to worry about. Her daughter is doing amazingly well! That in return gave me hope! That's how great God is! He uses you and in return you receive! I know some people get tired of me posting about Pediatric Stroke, but this just showed me that I'm doing the right thing! Thank you all for all your support! Love, Mimi

"But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary, and they shall walk and not faint." Isaiah 40:31

Sometimes it may feel like all you ever do is wait, wait, wait. Especially when it is something you want from the bottom of your heart! But we know that we're not waiting for nothing, we're waiting knowing that God will come through! Now while we may not have seen complete healing and restoration yet, we do see it bit by bit. And we celebrate every bit as though it was the complete healing. Isaiah has been recovering so well and we are truly blessed! He rolls from his tummy unto his back and from side to side. He can eat baby food without any problems and has been using his right hand way more, opening it a lot easier. He now can sit up unsupported for about 30 seconds to a minute! Yesterday he completely impressed me! He transferred his rattle from the left hand to the right - using his right hand to transfer it!!!! He amazes me every day! Whenever we hit a setback he gets better within a few weeks, sometimes even days! I truly hope and pray that it will always be this way. He is such a fighter and no matter how much we bug him and how much therapy and lab work and what not he has to endure he's always happy! (Minus the time he gets poked of course!) Seeing him doing so well is worth waiting for! And we will continue to wait and to trust God for full recovery! Love, Mimi

Nia, my precious Nia! Thursday evening wile I was cooking dinner Nia watched some Sesame Street videos on my netbook. She must have thought it needed to be cleaned because when I came back downstairs I noticed the keyboard was somewhat wet. Gotta love kids! Needless to a say most of the keys are not working any longer! So I turned it in to get it fixed....I should take it out of her allowance but then again, she doesn't get an allowance yet. Oh well, it's just an object, right? At least I keep telling myself that.

It's not exactly solely her fault, Joseph someone left the bottle with the wipe solution open. It appears to be an easy fix though, hopefully.....

Love,
Mimi

PT and a magazine article (or mommy needs to vent)

Today was Isaiah's first physical therapy session with Nancy. We already know Nancy from the NICU and from the IDP and we love her! Well, Isaiah usually gives her a very serious look, just so she knows how tough he is! So it's mainly me loving her.....Anyway.

He did great. Moving his right hand way more, opening it without us having to stimulate it first. Reaching with it - not so much but hey, it was only the first session. Of course he wouldn't show her how he puts his hand in his mouth and how he reaches for the remote and my phone or laptop at home, no, that would be showing off and Isaiah is way too humble, haha. Just kidding. Truth is, when he's in a new environment or anywhere he doesn't feel comfortable, he will use the left hand. It makes him feel confident since he can control it better. He does have a great chance of using both hands equally well in the future but as always, only time will tell. Gotta love the waiting game!

On a different note, I read an article on parents.com yesterday about a mother whose child had a stroke at birth, their story was very much like ours. I think it is great that Parents Magazine is spreading awareness but reading page 3 of the article and the fact sheet was a little disturbing. It stated that "research from the University of California, San Diego that found that 60 percent of infants and children who'd had strokes showed signs in their teen years of psychiatric disorders, particularly ADHD." (Real Mom: My Baby Had a Stroke, Parents Magazine, September 2010 issue). Real Mom: My Baby Had a Stroke

 Here's why I find this very disturbing (stepping on soap box): health care providers, teachers, etc. tend to use the term ADHD VERY loosely nowadays. They are extremely quick to diagnose a child with it, often not considering that the issue for the child's behavior may actually lie somewhere else (boredom, lack of activity, changes within the family, etc.) so I cannot take this research's outcome very seriously. Considering ADHD a medical and psychiatric disorder is another story, that would suggest the issue lies within the child. Again, it doesn't take the surrounding into consideration but often children show those signs that are supposed to be sufficient for the diagnosis in one setting but not in another. So again, the actual issue may not lie within the child but in the surrounding. So then, how can it be a medical disorder? Don't get me wrong, I appreciate the article. However, I missed the insight of medical experts and information for parents on where to find out more and maybe even get help. For me, as a parent of a child with Pediatric Stroke I rely on any information out there and especially on it being reliable. Alright, I'm stepping off of my soap box now. Thanks for letting me vent (well, you didn't really have any other choice but I still love you for it)!

Love,
Mimi

36 days....

36 days and finally we will be done! With the phenobarbital that is. My apologies for slacking as far as me posting is concerned. I know, you would think with me being a stay at home mom I should have time here and there but for some odd reason I don't. Two kids really do make a difference! Before I'd do whatever I needed or wanted to do while Nia was in school or napping. With her not being in school anymore and Isaiah demanding quite a bit of my attention there never seems to be time for anything. It's as if they have formed an alliance against me, they almost never nap at the same time! Anyway!

So we're weaning Isaiah off of the phenobarbital. "Pheno-what?" you might say, phenobarbital is Isaiah's seizure medicine. At his last appointment they drew blood and found that the level is below a therapeutic dose and since he doesn't show any seizure activity we can now safely wean him off by decreasing the dose over the next couple of weeks. God, I'm so happy about that! He sooo doesn't like taking it, there are days where he literally spits it right back out! First I tried to give it to him with a nipple from one of the bottles, then, since he didn't like that so much, I mixed it with breast milk. He was fine with that. When I ran out of my stash of frozen milk I returned to the nipple method. That went ok for some time but I guess because he wasn't used to drinking from a bottle he didn't like the nipple after a while. Plus, he didn't like the taste of it and would just let it run down his mouth. So my last resort was to prop his mouth open and give it to him directly from the syringe. The first time it ended up in my face! He lets me do it now but he's still not very fond of it so it's great that we can soon say bye-bye to that nasty stuff! Let the countdown begin!

Membership anyone?

Update on Isaiah: He is doing much better as far as moving and using his right hand is concerned! He loves to use it to grab my hair and pull my head down so I can kiss him! We met with Isaiah's nurse Sarah and his physical therapist Nancy this past week. It is as we suspected, Isaiah will be left-handed. Now some of you may think, "and?". Well, like I said in a previous post, children don't develop a preference until they're 3 years old. However, infants and children who had a stroke usually develop this preference quite early. It has to do with how the stroke affected their brain. In Isaiah's case it affected the left side of his brain, which means that the right side of his body is affected. Now, it's not a bad thing that he will be left-handed of course, we just need to make sure we work on his right hand being fully functional. The good thing is, it doesn't seem like his right side is significantly weaker than his left, he just LOVES his left hand, or as Nancy would say:"He thinks his left hand is the bomb!" The next steps will be to see his pediatrician again and get Isaiah a referral to see a pediatric neurologist, weekly physical therapy and fill out paper work for the Exceptional Family Member Program. The EFMP is a program that the military offers for family members with a special condition. It ensures that the family only gets stationed where the family member can receive the care they need. It also helps them qualify for other programs, such as the ECHO program, which provides the family member with any thing that the basic health insurance may not cover. That will make 4 programs altogether so far that Isaiah is a part of.

PROGRAMS, PROGRAMS, PROGRAMS! It can be is overwhelming at times but we're truly thankful for all the support he gets.