No end in sight....but good news on the horizon.

Where to start???  So much has happened and it seems like we aren't even scratching the surface.  What's next?? What new piece of equipment will we have to subject him to next?  Are the close to finding a cure?  WILL THEY EVER FIND A CURE? (This last question haunts me the most, if you can't tell)

Sorry...just a few questions that came running through my already cluttered mind.  Now, on to the most important question...what has our little Noah been up to lately?  It seems as though there is no end to the torture devices that enter our house.  Some are better than others, but they all still point to one evil.....SMA.  I have watched as my precious son continues to struggle more and more.  All I can do is to sit back and watch as this disease continues to take more and more of a toll on his already fragile little body everyday.  As I watch thoughts creep in.  God what did he do to deserve this?  Why is he having to go through this?  Will SMA take the one gift we prayed so hard to You for, away from us?  What will happen next?

Within the last two weeks, it feels like we have been from one end of the spectrum to the other.  Noah's new stander was delivered.  The pulmonologist prescribed Noah a bi-pap machine that we picked up today, after a two hour wait.  Wednesday he goes to get casted for his RGO brace.  A new, additional PT and OT alternate every Monday to come and help strengthen his muscles.  The previous question comes into play now "What's next?"  It seems like more and more is put on Noah's shoulders everyday.  How much can this child take?  Apparently more than his parents.  I know for us, it's not just that he has SMA; it's the fact that we feel like he is being robbed.  Just watching him, you can see he is happy.  It just breaks your heart to watch him struggle day in and day out.  Anyone who has every been in the military or heard people talk about "boot camp", knows that new recruits are forced to crawl through tight spots and muddy trenches, all while being timed.  I would give anything on this planet, even my own ability to walk, just to give my son the opportunities that (right now) he will never be able to experience.  Snow boarding, hiking, rock climbing, football or just about anything outdoors.  It was one of the reasons we wanted to move to Utah.  We did it to give him a better outdoor experience and opportunities.

When Lauren found out she was pregnant, we were both terrified.  Even more questions flooded our already overwhelmed minds.  Will baby Eli have SMA?  If so, what type?  If Eli doesn't have it, will Noah resent him/us?  What, when, where, who, why?  So many questions and it seems like very few answers.  That was until February 21, 2012.  We finally received the news that we had been waiting for weeks to hear.  Baby Eli does NOT have SMA.  Now we just have to sit back for a few years and see how things go with Noah.  Hopefully, one day soon, we will be able to put a post on here that says Noah has been cured of SMA.  Until then...all we can do is hope, pray and educate.






                                          New Stander

                                       First time in Bi-pap mask

Not in the mood....

I have been terrible with updates lately....and quite frankly I just haven't been in the mood to do it. The exhaustion and emotional wear and tear is getting the best of me...

So I have a lot to fill in.....

Noah was evaluated for his own stander on January 17th and it will be 90 days before we get it but thankfully we have the loaner to use....The weekend of the 21st he came down with Croup, which was very hard on him and his little body. We took him to the pediatrician Monday the 23rd and they gave him some steroids and he kicked it in a few days...it was horrible watching him struggle to breathe though.

I have been working on adding some additional PT to the EI that Noah gets 2 times a month because he is not getting the therapy he needs. We are doing his stretches but he is starting to get tight in some areas and needs extra work.

Monday the 30th we had the amnio...it was definitely not what I expected and much more painful. We first met with a genetic counselor and signed consent forms and she explained the procedure and how long everything would take. After they take the amniotic fluid they send it to the lab and separate the fetal cells and grow them in order to get enough to test. The chromosome analysis results will be back in about a week and the SMA portion will be sent to Seattle Children's Hospital and we should have the results in about 3 weeks. After talking with the genetic counselor we were taken to a room and I had a detailed ultrasound. We found out that Noah will be having a little brother. His name will be Russell Eli Hyche (we will call him Eli though). Noah was very protective and Daddy had to get him close enough that he could hold on to my arm. As long as he was touching me, he was fine. Silly boy...he knows about all the poking and prodding from experience...After they looked at baby Eli's anatomy, the ultrasound tech took the images for the doctor to look at. We waited for about 15 minutes and then the doctor came in to do the procedure. They scrubbed my belly with iodine and then with ultrasound guidance inserted a long needle just below my belly button. The initial poke wasn't too bad but the needle going through the uterus was painful. The fluid was retrieved, needle removed, and then they checked Eli's heartbeat which was fine and then sent us to the lab for me to get blood drawn to send with the sample. We went home afterwards and took a nap with Noah. Exhausting day to say the least....

The following day January 31st, was Noah's appointment with Dr. Swoboda/Sakonju. When we got there they weighed and measured Noah (19 pounds woo hoo). We then met Abby and she began to take us to a room, but we had to make a pit stop per Abby so Dr. Swoboda could watch how awesome Noah is doing in his wheelchair. We went to the room we are usually in and were met by Dr. Sakonju. Since Noah had just gotten over a respiratory illness they recommended not sedating him for the EMG since it slows respiration. They did it on us both first so we could see what it felt like. It wasn't painful just uncomfortable but we decided to not sedate him with Versed this time. They placed two small electrodes on his right hand and then shocked his wrist to check his motor neuron levels. This time he was actually a little stronger then he was back in October. Not much but we will take it. He didn't like the procedure but daddy turned some music on and he "danced" and got through it like a champ. We were proud of him. After they finished we discussed some different medications to possibly try. We will be talking about this more later and will make a decision. By the time we got home Noah was exhausted and so we put him in bed and both of us went to work.

Yesterday February 1st was Noah's PT evaluation with Donata. I was looking forward to this to see what other therapies etc we need to look into. Donata did her regular routine of checking his range of motion, looking for contractures and looking at his overall strength. She was impressed but he does have a lot of weakness in his hips, back and legs...which we already knew. She got an idea to try something...she put together a make shift leg immobolizer and put on both of Noah's legs and got a pediatric walker to see if he would hold himself up. He wasn't able to...but we moved him over to a table and let him use it as a support and we saw our baby boy stand on his own for the first time in 9 months. Amazing. Donata is very positive and thinks that possibly with the right braces we could get him to stand/walk. Not so sure about that but I know we could at least get him to stand because we saw him do it yesterday. He was very excited and laughing too! He actually tried to pivot and take steps....She will be getting Noah a HKAFO (Hip Knee Ankle Foot Orthotic). This will give him support in the hip area, hold his knees in place and allow him to stand. She is also going to meet us at a pool one weekend and teach us how to do pool therapy. (There is no place out here that does pool therapy on children) We are excited though because this will allow us to be involved in his therapy a little bit more and save some money as well. Plus Noah loves being in the water.....She is also setting up an OT and PT that are experienced with SMA for us to get private therapy. What a productive day!

That is it for updates for now as we continue on this journey...Thanks for all the prayers and support...We will update when we have more news...