Muscle Biopsy Report

Yesterday Jordan had her follow up appointment with Neuro.  I really hate those appointments because they take forever to get in to be seen.  Her appointment was at 3pm, but we did not get back to see the doctor until after 4:15pm.  Ridiculous.  Any how, her muscle biopsy came back with  no serious conditions which is good, but it couldn't tell anything more.  It showed variations in the muscle, which means there is something going on, but they have no clue what.

Dr. believes its genetic, and that she should have this genetic testing done.  Apparently its this new test that's only been out for about 6 months. However, insurance does not cover it.  And we cannot afford to pay for it.  Even if insurance covered it, I would still have a 20% co-pay on it, and again its too expensive.  The cost for this testing is $17,000.00.  Plus my thinking is, if it is genetic, its not going to tell us what to do to fix it. You can't fix a genetic issue.  So as of now, the Neuro dept. is going to put this through to the ins to see what they say.  If they deny it, he will refer us to a genetic specialist, and see what the ins co says if they submit the claim, since they are the genetic specialists.

In the meantime, he is referring Jordan to a Pulmonary specialist due to her constant coughing.  He says that with the low muscle tone she can't cough up the fluids or secretions because she's not strong enough too.  He is hoping Pulmonary can take a peek and see what will help her.  We need to get this figured out quickly, because he (and us) are afraid if she can't get rid of whats trap (so to speak) she could develop pneumonia  He also wants her to start Speech Therapy.

I honestly didn't realize how much muscles come into play.  He also asked if shes constipated a lot.  I told him YES.....she has been for over a year.  We have been giving her Miralax daily to help her.  I guess because of the hypotonia, its hard for her to push which makes sense.

Seriously, I don't know how much more this little girl can take.  And I don't know how to help her.  I feel so helpless.  I just feel that Neuro is now just grasping at straws, and really don't have a clue.  I have a call into her doctor to see what his thoughts are and if he has an idea of what direction we should go in.

She is still in PT/OT 3 times a week, and we work with her daily at home.  We see progress, but its really slow.  I know this is going to take a lot of time and patience, but its hard when I know my baby wants to be doing more and can't.

Here Muscle Biopsy site looks really good though.  I am hoping there won't be much of a scar when it's completely healed.

Jordan's Hospital Stay

Tuesday 09/11/12:

Jordan could not keep any food down and was throwing up constantly for over an hour and a half.  I called downtown where she had the procedure done and they advised to try just giving her juice to see how she takes to it.  She seemed well for awhile, but then started coughing and gagging.  I called and left a message for Dr who performed her muscle biopsy, to see what we should do for her.  She called back, and after we talked for a bit, she wanted us to take Jordan to the ER to be checked out.  She wanted a pair of eyes to look her over, and to make sure she wasn't dehydrated.  I called Kevin, and he left from darts to go with me.  We got downtown around 10pm.

They looked her over, and did a chest xray which came back clear.  They believed that her throat was inflamed because of the tube that was down it during surgery.  They tried to give her an IV to give her some steroids to help with the inflammation, but they could not get a line.  Instead they crushed up a pill and mixed it with apple juice to get it in her system.  They also gave her a breathing treatment.  She finally calmed down, and fell asleep. 

Wednesday 09/12/12:

They came in the room about 2:30am to tell us that they were sending us home, since her vitals were good, and because the steroids will work for a few days after as well.  They got all the paperwork completed, and were taking her vitals again before discharge.  Well when doing her BP it woke her up, and she had this nasty croupy cough.  Doctors heard that and said we are NOT going home.  They were keeping her to find out what else is going on.  Nurses came in the draw blood and to give her some IV fluids.  After 2 more pokes they were able to get blood, but when they were trying to get the fluids going her vein blew.  Since they hit the 3 strikes your out, they said they would wait for the IV team to come in to do it, since it was not easy to find a vein.  They also gave her another breathing treatment.

In the meantime they worked in admitting her.  They did not have any available rooms for her, so we had to stay in the ER.  They were nice enough to move us into a bigger room, to bring in a crib for her, and a bed for us.  We finally got into our new ER room around 5am.

We were all able to get a little sleep.  Around 7am the IV team got there, and after 1 poke and some probing.  they found a vein, and started the IV fluids, while we waited for a room.

They finally moved us to a room around 3pm.  It was a private room, because of her croupy cough.  They like to keep kids away with croup from the other children.  We assume that's why it took so long to get a room.

We weren't there long though.  Doctor came in a little while later and explained that this was brought on by the tube being down her throat, and because of the low muscle tone, its harder for her to keep her airways open.  He said the steroid will stay in her system for another 3 days, and since she looks hydrated, and was keeping some food and juice down he was confidant in sending her home.

We made it home around 6ish I think.  Jordan ate and drank a little more and finally fell asleep.  She was up a lot though in the middle of the night with this terrible cough.

It was a long couple of days, but I am glad she is doing better and that's she is home where she can be more comfortable.

Jordan's Muscle Biospy

Jordan had her muscle biopsy this morning. Here she is in her yellow scrubs waiting for them to take her back. Poor thing was so tired and hungry. She had to fast and we had to be there at 6am.Jordan did well. They only had to take from 1 spot (left upper thigh). She has to keep the bandage on her site for 5 days. She had some wheezing after surgery so they had to give her 2 treatments before we left. Here she is sleeping on me after she calmed down from surgery.

She slept most of the day. She was up for about 2 hours, ate and played before going back to bed for the night. She can resume therapy Wednesday. We should have the results sometime next week. It should tell us how bad her low tone is and where to go from here. Her next appointment with Neuro is Tuesday (09/18) at 3pm.

Go BLUE!!!

Since Michigan plays today, I thought I would dress the kids up to show support!!! They look adorable in their Michigan gear.

I love this one. Jordan was NOT happy I turned off Bubble Guppies, so she would look at the camera.Here she is with her Michigan Shoes. These were Nathan's. Its cute she can wear a few things that her brother used to wear.

Nathan's First Solo Swim Class

Today is Nathan's first day of solo swimming. We have taken him to the parent/child classes before but this time he is on his own. He was so excited to start. He loves being in the water. His teacher is Ms. Rubi again. She just loves him and the feeling is mutual. Here is Nathan before class started.....

Here is Nathan getting ready to get in the water. We wanted to take more pictures, but I guess the new rule is, you cannot take pictures with other kids in it. Which I understand, but it stinks. I was hoping to take a video of him.

He did so well. I only almost had 1 heart attack~Lol. When she had them get out to jump in, Nathan almost jumped in without Ms. Rubi being near him. Kevin and I both yelled "Nathan don't....wait for Ms. Rubi" Luckly he didn't jump in (Or else I think I would have went in after him)

He is so excited for next week.

Thanks again Grandma for paying for this class as part of Nathan's birthday present. It was worth the wait!!!!

Nathan's first day at Preschool (4yr program)

Our little man started the 4yr old preschool program today. He will be going Mon, Wed and Fri's. 9:30-11:30. He had a good time today and did not want to go home. I am so proud of this little boy. I cannot believe that he will be in Kindergarden next year. Yikes!!!!!

All ready for school. He picked out his outfit today. He had to wear his "chill out" Shirt.


He liked dressing up and being a cowboy!!

Ready for school. Nathan standing next to the preschool sign today. We are so proud of him.

Here is Nathan standing outside by the sign last year when he first entered the 3 year old program. How time flies!!

Vacation Last Week

We took our vacation, and spent most of it in Frankenmuth. We surprised Nathan, and didn't tell him we were coming. He figured it out real quick though. This has to be our favorite vacation spot. We stayed Monday through Thursday at the Bavarian Inn. The kids had a lot of fun, as did Kevin and I. We walked around a lot and played a lot of games. We all had a real nice time and did not want this vacation to end.

On the Bridge heading into town.

Here comes the boat. We didn't go on it this time, but hopefully we can next time.

See the BIG hole in the side of our hotel?? They are building 2 brand new water slides. I cannot wait to check them out. They should be open by Thanksgiving of this year.

And a Frankenmuth trip is not complete without stopping at the Cheese Haus. Had to get some cheese and the famous Cheese Shot!!!!

Kevin and the kids!!

Me and the Kiddos!!

So glad Nathan did not get his head stuck this time when getting this picture.

Kids playing in the room before heading out to play. Poor Jordan does not like flashes on the cameras.

That's better, mommy turned the flash off.

Nathan was so excited the big inflatables were open. He had the whole place to himself.

Then of course Daddy had to give it a try too!!

Jordan relaxed while Nathan played. Maybe next year she will be able to go on it.

Getting ready to head down the slide!!!

Walking the shops!!!!!

Grandma and Papa came up for 1 night to spend a little time with us. We were so happy to have them there with us. Nathan was so excited they were there and were able to go swimming with him.

Nathans favorite thing to do!!!!

And little miss miss. She just loves the water too. She has such a good time, and loves to relax.

Look at that smile!!!!

And here is Nathan playing is favorite game of all times....Deal or No Deal. He did get the highest case.

We cannot wait to go back and the water slides should be running then. So excited!!!! Nathan has not stopped talking about Frankenmuth since we have been home. He keeps asking when we are going back. It's really cute.