Friday, February 12, 2010

We're back!

It has been another crazy couple of weeks in our house.  Two weeks ago, I thought (and still suspect) that August was having infantile spasms again, but I could not get a good enough video to show the neurologist because they were so subtle.  I was very upset when I started seeing them, but relieved after talking with his neurologist at Hopkins who said that the irregular brain wave pattern (hypsarrhythmia) almost never comes back and it is probably just a sign that he needs a slower taper off the steroids.  He never went back to that blank stare, which would've demonstrated more of a problem. So he'll be on the steroids through the first week in March, but the spasms are over so life is good....

Other than that we have been snowed in!  Yikes -- it really has been about two weeks since we've really gotten out of the house, which has made everyone a little crazy.  The boys love the snow so at least they could burn off some of that energy outside, but I think we all could use a little bit of time with other people! 

August has been chattering away again, which is such a wonderful sound to hear.  He is almost sitting on his own, which I thought was going to take a long time after the steroids/spasms.  As Valentine's Day approaches, I feel lucky to have all of these sweet boys around me....

Tuesday, January 19, 2010

He can hear clearly now, the fluid's gone...

August got his tubes put in this morning and he has already shown a noticeable difference.  I cannot imagine what it must have been like for him - probably like when someone is talking to you and you're underwater in a pool.  He is smiling more and laughing....it has been a fantastic day.  And what a easy procedure!  We got to the hospital at 5:45 am and we were home by 9 am and most of that was just sitting around before the doctors got in.  I am so glad that we had it done - the doctor said there was a lot of very thick fluid on his right ear and less fluid on his left, but still enough to affect his hearing.  One more hurdle jumped!

On to the next hurdle, bottles.  August is exclusively breastfed right now and when I say exclusively, I mean exclusively...he has not taken to a bottle yet.  I have tried five kinds of bottles and nothing really suits him.  I am thinking that I probably have to just let him get hungry enough and he'll take it, but I'd rather not do that and what if it doesn't work?  I would love to know if there is anyone out there who breastfed their baby with DS and had success with a particular bottle.  I am pretty sure that it's going to come down to trying many more and he'll probably pick the last one, but I thought I'd throw it out there.....

Off to have a chat with August....

Wednesday, January 13, 2010

Back in the Saddle (or the Bumbo)


Toys brought to him by Everett...

And he was more interested in Everett than the toys...


What a hunky chunk...


Well August went to the ENT today and they decided to put tubes in so we'll be going to the hospital for that next Tuesday.  I am a little nervous about the general anthesthia, but it is not his first time so I'm sure he'll be fine.  I just feel bad for his poor throat.  It's also very exciting that he will be able to hear again!

Today was the first day in a long time that he has done well with his physical therapy and I know it will only get better and better as he finishes out the steroid and gets rid of the RSV.  Well, that's all for today, enjoy the pictures.  I enjoyed see August return to his pre-spasm status!

Tuesday, January 12, 2010

Normal brainwave, more normal sleep!

We took August to Johns Hopkins yesterday for his follow-up EEG to check his brainwave pattern.  I am happy to report that he no longer shows the hypsarrhythmia pattern and is being weened slowly off of his prednisilone!  His neurologist said this is the absolute best case scenario and the chances of the spasms reoccuring are slim.

Howie and I are on cloud nine.  The last month has been a lot of bad news with some silver lining, but this is purely positive.  I went up to the EEG without Howie yesterday and that is the first time that just one of us has gone to JHH for one of his tests.  I was sure that they were going to say that we had made little to no progress and he would remain on the steroids.  I was explaining to the technician that usually I hope for the best and my husband, Howie prepares for the worst.  I know that you're supposed to do both, but we both only do one or the other.  This time I decided that it is much less painful to prepare for the worst and lately, it has usually been bad news so my husband seemed to be fairing better.  This time I prepared the worst and got the best.

So now we are reducing the predinisolone and hopefully increasing sleep!  We'll now be moving on to tackle August's ears.  He is scheduled with an ENT tomorrow. He has had fluid on his ears since beginning of December and he was babbling, but has stopped.  I was unsure through December whether it had more to do with the spasms or his ears, but now I know that it is not the spasms/hypsarrhythmia, it has to be his ears.  I know that children with Down Syndrome often have trouble with their ears, particularly fluid build up so I am hoping for a plan of action to recover August's hearing so that he can really get back on track with everything.  It seems like everything halted for him in the beginning of December because of the fluid and the infantile spasms so after his ears are evaluated, we should be able to make some strides with his physical therapy again. Exciting! 

The other two boys are being so patient with all of the trips up the road.  We have tried to have as few people taking care of them as possible to maintain some stability, but now they are somewhat skiddish whenever we mention taking August to the doctor.  I know they are wondering when I'll be back...in two days or two weeks?  About an hour into the drive, I'm already missing them, but everything I read tells me that these first few years are tricky with all of the health issues, but it gets better....I'm looking forward to fewer trips to Hopkins and more adventures will ALL of my boys....

Wednesday, January 6, 2010

Our Family - A crash course



I am starting this blog in hopes that other new mothers of children with Down Syndrome will have one more perspective. I am new to everything involved in the realm of Down Syndrome and I have found that some of the most worthwhile information is the experiences and accounts of other families so here goes...

Our family is made up of myself, my husband, Howie and our sons, Everett, Finnleyand August.  Everett is four years old and is honing his skills as THE big brother.  Finnley is our very feisty and fun two year old who always keeps us laughing.  Their little brother August was born in May 2009, six weeks early and he is enjoying the company of his brothers and our dog, Oscar immensely!  August was diagnosed with Down Syndrome and an ASD five days after birth. 

August had a short stay in the hospital after birth and did very well catching up on his weight.  August's diagnosis was a shock.  Each time they gave us more correlating evidence (the ASD, the features and then ultimately the blood test), I would hope that perhaps they were wrong.  Neither my husband nor myself had anyone with developmental disabilities in our family and it seemed like we were plunging into a very scary and unknown world.  I cried a lot the first two weeks, but then decided that I needed to learn more about both the similarities and differences between raising August and our other boys. 

I read "Roadmap to Holland" and it was a very important part of my "recovery" from the initial sadness that I felt.  Jennifer is so honest and that was comforting.  I felt less guilty about my sadness and could then dive into the information, which I knew was going to be the most productive thing to do. 

After the initial shock of his early birth, my first c-section, his diagnosis of DS and an ASD, our life seemed to level out a bit and we wondered if August was going to hit any of the health bumps in the road.  In December, after a bit of internet research, I determined that he was having infantile spasms and scheduled an EEG to check for hypsarrhythmia (pattern indicative of infantile spasms) at Johns Hopkins. The EEG showed the pattern and he was put on steroids to correct it.  He stopped having the spasms two days into the treatment, but we are still waiting a week more to take another EEG so that he can be taken off the steroids.  Infantile spasms are scary because the brain wave pattern prevents them from taking in new information so they stop interracting and making new strides.  If it is not caught early, it can further delay development.  Here is a video of the spasms that I posted to youtube for others to see what they look like:


However, August has been smiling again and he is much closer to his old self.  The steroids make him restless so nobody is getting very good sleep so I know his fatigue is getting in the way of some progress.  Also associated with the steroid, is a suppressed immune system, which has lead to strep throat and most recently RSV.

Yesterday he was sent to Johns Hopkins ER to be checked for RSV and he does have it, but was not admitted to the hospital.  The poor little guy is on so many medicines and still is not feeling the best.  I will be so happy when he is feeling good again!

It has been a rollercoaster and those are just the health issues, but August has changed our lives forever.  My husband and I always talk about how fortunate we are to have Everett and Finnley's health and, in comparison to some children with DS, how lucky we are that these are the only issues that Auigust has encountered.  August's arrival has made us take a step back and appreciate all three of our boys as well as each other so much more. 

I will continue posting other vignettes from our life, but there is a start!  Thanks for reading...