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Hi Everyone,

It is now time for a much overdue report on MJ. She is still seizure free and has been since the beginning of July. Last week has been one of her best ever. Monday, she actually did physical therapy with a mininum of complaining and she did a great job. Then she played in her stander for almost an hour. That evening she was back in the stander for another hour and was bouncing to the beat of the musical toy she was playing (while Mom was cooking). It was so great to have a day like that. The rest of the week went well for her also but not as impressive as Monday.

You are probably wondering what has happened over the last few months. I think it has been over two months since my last update. We have had our ups and downs. Her neurologist has kept her on anti-seizure medication because he is worried about the return of seizures. We have been rejoicing about the seizures completely stopping and her increased development but waiting for "the other shoe to drop". It is unnerving but MJ continues to do better. A few weeks back we were very worried that something was going wrong. The day after I commented that I could see improvement in all areas, it seems as if all improvement stopped for two long weeks. She finally started to come around and we realize that all kids slow down and speed up developmentally. e can’t ask too much from her all at once since her seizures stopped because she has so many areas in which to improve. She has been steadily improving ever since; however, the worries remain . . .

Several weeks ago we found out MJ lost a little weight in the last 6 weeks. She grew 3/4 of an inch though so she is very tall and is stretching up more than growing out. ACTH, the steroid shot, usually causes a big gain in weight then there is a slowing of weight gain afterward and then resumption of normal weight gain. MJ didn't gain the usual weight then lost a little. It is somewhat alarming but the pediatrician doesn't think it is a problem yet. She also mentioned that she was not willing to count her out since MJ has already exceeded expectations for "hypsarrythmythia" kids. She was being positive but that is a really alarming statement since MJ still does not walk, talk or crawl. I think that was our "call to arms". We had been waiting to see what would happen after the seizures stopped but now it has been over four months and she is not where we had hoped she would be.

Since then we have been working on forcing, inducing, or helping things along. We are being more diligent and working harder to help her and we are seeing results. Hence the great week that has buoyed up our spirits. So let me report on some of the good things that have happened or improvements she has made. MJ loves books. In fact, any printed materials excite her. If you show her one of her favorite books, she gets really excited. She loves being read to and always turns the pages herself. Sometimes she just wants to turn the pages and not have the book read. She smiles more and makes so many more new expressions. She is rolling all over and getting to the toys she wants to play with. She is stronger, sleeps better and tolerates being upright longer. She is more picky about what she is eating. She reacts when we come in a room. She makes great eye contact and is really aware of what is going around her – no matter where she is. You can tell when she is over stimulated, she shuts down on you which is a great normal reaction. Her eye-to-hand coordination is improving so she is starting to help feed herself a little. She is really good with her right arm so I guess she won't be a lefty like her mom. I was watching her roll back and forth yesterday and she was being very purposeful. She knew exactly what she was doing and was trying figure out how to do more. The thing that I think is the most impressive is her desire and determination. Both have improved dramatically. With drive and determination comes the will to overcome all obstacles. That is probably her most important improvement.

I have to tell you about this really "normal" experience we had with her. After her last doctor’s visit, she had to have blood drawn for a few tests to help determine the cause, if any, of the weigh loss. We took her to the lab and proceeded to tell the tech how difficult this was going to be. We have many horror stories we can tell about that. The tech look at her arm and says that vein looks good - the first place she looked. We both held her down and the tech makes the stick, MJ screams and blood is drawn. The whole process took 3 minutes tops. It was a totally normal experience with a 2 year old. [Usually, it takes the techs awhile to find a vein that will work and they poke and prod and blow out several veins until they get someone “more qualified” like a neonatal nurse who can make the blood draw.] Funny what makes you happy when you are a parent.

Well that is the last few months in a nutshell. As you can tell, we still continue to all need all of your prayers and support.

Take Care
Rich & Christine

 

 

 

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