Jordan's Ophtalmogist Appointment & PT/OT Appointment

Jordan seen the Ophtalmogist doctor today. Genetics wanted to have them check behind her eyes, just to see if anything was off to support the hypotonia. All looked good.  He did say the nerve that attaches from the eye to the brain is a little thin and odd shaped but nothing to be concerned out. We also found out that she is near sighted and has astigmatism so she needs glasses.  Ugh! Really? What else does she need to have happen to her. I cannot believe she has to deal with yet another issue.  Kevin and I took her afterwards to the eye store to pick out her new glasses.  And yes they are pink :)  We will be getting them in 7-10 days.  We will see how long it takes for her to get used to them and not be trying to pull them off every 5 seconds.  But at least now she will be able to see better and will help with her development.  I am just sad she will have to wear glasses for the rest of her life.  It's a pain 

Then at her OT/PT appointment we found out that Children's is downsizing and closing the location end of month.  (Along with 2 others)  She's going to lose the people she's finally comfortable with. (Her therapists don't even know if they will even have jobs or not) We have ZERO clue where were going to end up or when we will even be able to get in to start back up. She can't lose anytime. Every minute is precious. And its so hard to get PT and OT for after I get out of work. Jordan does not trust easily now poor thing has to start from scratch with new people.  This is so unfair.

Jordan's Progress!!!!

Jordan saw the Infectious Disease (ID) doctor on November 29th.  She seems really nice and listened to all my concerns.  She ordered a lot of blood work to check everything it could possibly be with Jordan always sick all the time.  I had to take Jordan down to Children’s the following day because they could not draw all the blood needed the day before.  After 6 pokes (total in 2 days) they finally got enough to test everything.  (Lesson learn, only take her to Children’s for blood work)  We should have those results at her next appointment, which is the 27th.   I hope we get the answers we need.  This poor little girl has been through way too much already.

On December 4^th, I called Dr. Frattarelli’s office and told them about her not eating and how much she threw up the day before.  I am really concerned.  Jan from the office called me back and said I can get her in to see GI right now in Southfield if I can make it.  Of course I jumped on it.  Picked Jordan up from grandma and papa’s house and headed to Southfield.  I met with Dr. Madani (Nathan seen him back in the day) He listened to everything and stated he really believes she has Reflux.  He is starting her on Prevacid.  She will get 2.5ml before breakfast and before dinner.  He says give it 2 weeks and if she's not better they want to do a scope.  I hope this works. She can’t keep going on the way she’s been going.  Fingers crossed!!!

I spoke with the ID doctor on Friday to let her know we seen GI and that they believe it’s Reflux.  She also believes all the “colds” Jordan has had is due to the Reflux as well.  She stated that Jordan’s body is working non stop to fight the Reflux, that when a virus attacks her body ignores it to continue to fight the Reflux, making her sick, and staying sick for a long time.  She said once the medicine starts to work and controls the Reflux, if Jordan is to get a virus the body will then fight the virus, because it’s not dealing with the Reflux.  That makes a lot of sense if you think about it.

We started the Prevacid Wednesday night, and finally by Saturday we noticed a HUGE change.  She was able to eat 3 meals, no gagging or throwing up.  Sunday was even better.  She ate all 3 meals.  For dinner she had 1 chicken leg, mashed potatoes and gravy and macaroni and cheese, She never gagged and kept it down.  She was even eyeballing my food like she wanted it.  I don’t want to overload her belly so we are taking it slow.  I am cautiously excited.  I hope this keeps working for her.

She is at Laura’s today. (The Sitter)  Laura text me about half hour after breakfast and said she ate 1 cup of oatmeal.  No gagging or throwing up.  Yay!!!!  I am taking this day-by-day and slowly re-introducing food she loved.  We will see what the days bring.

Her upcoming appointments are:

Speech and Swallow Evaluation: 12/14/12

ID: 12/27/12

Genetics: 01/03/13

Neuro: 01/29/13

GI: 02/21/13

She is also continuing PT and OT: Mon & Wed for 1 hour and 30 min a day and PT/OT Fridays for an hour with Tote.

Jordan seeing Dr. Frattarelli Again

Jordan is still not doing well with eating.  I'm lucky if I can get at least 2 pancakes a day in her. She has already lost about 2-3 pounds since August.  She's 20lbs 6 ozs) I took her to the doctor today because she seems to be sick again. (We were there for 3 hours) They did an xray to make sure she wasn't getting the start of pneumonia, which she's not. But he did put her on a round of antibiotics to kick out whatever's been lingering. On that note, he thinks she has an immune deficiency. We see the infectious disease (ID) doctor on the 29th.

For the eating issue he said it could be a number of things. 1st: she could have reflux and it hurts to eat (same as Nathan had) or some kids develop the fear of choking and when she swallows, it may hurt.  So now she also has to see GI and have a swallow test done with another specialist. Swallow evaluation is December 14th. As for GI, they can't get her in until Feb 21st. I'm Livid!!! She said if I have her doctor write a letter advising his concerns and fax it to them she might be able to get an earlier appointment.  I said "What? She won't eat, that's pretty concerning don't you think?" So I called doctor, and the referral lady Jan she said she would have the doctor get a letter faxed over. Now I am waiting to hear back if she can get in sooner. 

I wish my poor baby would just get better.  I hate seeing her in pain.  She doesn't deserve this.

Jordan's Sleep Study

Jordan had her sleep study overnight last night.  It was NOT what I expected.  They had her hooked up everywhere.  It was so hard to see.  They are checking to make sure her breathing doesn't slow down, or stop when she sleeps.  They say kids with Hypotonia, sometimes have issues with breathing.

Here she is before they hooked her up.  She is so tired and just wants to sleep.

The tech came in and started hooking her up.  Poor thing was so exhausted and cried so much that half way through fell asleep for the rest of the hook up.  She woke up and started screaming/crying and throwing up when they put the stuff up her nose and in her mouth (one was a recorder of some kind and the other was for oxygen.  That was the hardest part.  Poor thing could not have her pacifier and she looked so uncomfortable.  Here is out poor baby all hooked up.  It's still hard to look at this picture.  It breaks my heart.

She slept fairly OK.  Me on the other hand, I didn't get any sleep.  I kept checking on her to make sure she was pulling on any cords.  And when she was restless, the seahorse helped a lot when she heard the music.  So I would push it on every 5-10 minutes or so.  I am glad this night is over and hopefully she will not need another one.

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.

Jordan's Therapy

Jordan has been in therapy for a little over a month. She is doing PT and OT on Mondays and Wednesdays from 3:15 to 4:45pm Poor little girl hates it so much. She is just not used to being in all these different positions. I was hoping by now, she would stop crying during the sessions, but she still cries. She will cry the entire time she is there. I feel so bad for my little girl, but she needs it to get stronger. She will get there.

Here are a few pictures of her at therapy. Just to show how much she hates it.

In September she will also start PT/OT/ST with Tote again. That will be on Fridays at 10am for 1 hour. The nice thing with Tote is they will come to our house.

Here we go AGAIN

So here we go again. Different baby, different issues. Jordan is now 7 months old, and is not bearing any weight on her legs, she cannot sit at all unassisted, and she does not push up onto her hands when on her belly. She has gone for an x-ray, and it shows her left hip cup is shallow. Doctor is not sure if that is the cause of her not putting weight on her legs, so we have to see an orthopedic dr. (October 17th) She also wants Jordan to see Neuro (the Neuro she is seeing deals with the brain and muscular portions of the body) to rule anything out (cant get her in until Nov 30th~ridiculous) And now she has to start Physical Therapy. I am not sure if she will go for PT at Children's or Oakwood Hospital.

UGH, I keep thinking, how can we go thru this again. I know we will do what we need to for her, but I'm so afraid I can't be strong again. I just don't understand why this is happening. Are we doing something wrong?? I just don't know anymore. I will keep everyone updated as new information is given to me.

Andrea, the lady who did Nathan's OT is awesome, I asked her if she does PT as well as OT, and she said she doesn't but knows some good PT people. She has offered to come by Tuesday night to sort of assess Jordan to give me some peace of mind/clarification. I am hoping this will give me a little more insight. Please give me strength to handle this.