Thursday, March 22, 2012

A chair for Logan

Can I tell you how frustrated I am right now. I got a call yesterday from Logan's therapy saying that his seating assessment that was scheduled in a couple of weeks had to be rescheduled. The next date available was the first week of May. This assessment is to find a stroller/chair that supports Logan appropriately. He is gaining much better head control but is unable to sit independently as of yet. So we meet with the therapists and their special staff member that does the assessment as well as the vendor we choose that will work on ordering the equipment. I am very excited to get this process going and the delay is frustrating. Logan has outgrown his infant car seat...Yay! I can't tell you how exciting this is. He is too heavy to carry in it and his head is about to pop over top of the seat. So, now we wait another month and then it is at least six weeks before we get insurance approval and then the equipment has to be ordered. It is quite the process.

In the meantime I am trying to come up with creative ideas to transport him. I found a great car seat a Babies r Us that will work in the car. As for a stroller I will continue to use the baby stroller we had for Lauren and try and rig up some sort of a head support. He hates the stroller because he is pretty much lying down in it and every time he moves his arms or legs he hits the plastic around him. Somehow I have become a creative parent. I didn't think I had it in me but boy do the ideas come out when you are in a pinch! Visits to the grocery store will be tough. He can't sit in the seat of the cart. I did see a woman at Target yesterday pushing a stroller and a cart. I asked her if it worked well. She said it was great. That way her daughter was comfortable in her seat and she had plenty of room in the cart to fill for her family of five kids (all under the age of six). Yikes, she is an angel! I may have to give it a try. I hate to not be able to include Logan in our everyday routine.

For now, I will try to muster up the patience needed until we can get his special chair!

**This picture was taken last week when the weather was beautiful. I didn't see him smiling but somehow I caught one in a split second during photo taking. I swear he wasn't smiling but then when I was showing Joel the photos I saw it. Small miracles do happen and my angel is a miracle every day!

Sunday, March 18, 2012

GJ Tube change & Mayo Results

Last Friday Logan and I ventured down to Children's Hospital in Minneapolis to get his feeding tube changed. The GI doctors want it changed every three months. So we spent the 45 minute drive for a 10 minute tube change! Logan did well but didn't like being held down. I am glad it was a quick procedure and the staff was great as usual. We even taught the radiologist about the button buddie. It is a little dressing that goes around the site to protect the skin. He had never seen one and thought it was the coolest thing!

The Dr. from Mayo Clinic left me a message last Thursday while I was at work. She said that the second round of skin biopsy tests was normal. She said she is going to call tomorrow to talk with me. I am not sure where we go from here. Does this mean more tests? Should she re-evaluate him? Should we look for another opinion? I have no clue. I would like some answers but they may never come or may not come for a long time. In the mean time we will keep praying for his health and happiness. He has been doing great. He is so close to cracking a smile and he is getting more verbal every day in his own little language!

Monday, March 12, 2012

I just want to know...

I find myself on the computer paying bills, checking email/facebook, attempting to check items off my to-do list when I quickly find myself google-ing. I start looking up information on mitochondrial disorders. Something I have done many times before. Every time hoping to find something new or some nugget of information that may pertain to my son. Today I desperately typed in the search engine, "no smile, hypotonia, dysphagia". These are all things Logan struggles with. I thought maybe today would be the day I find some other child on the Internet that looks like Logan and has the same struggles as him. Once again I hit a dead end. Actually not such a dead end, more confusion, more possible diagnoses. I actually had myself thinking, maybe my son has cerebral palsy. Then I read on and it really didn't apply to him. I thought, could it be that easy. How could the doctors miss cerebral palsy. Then I realized, even cerebral palsy isn't easy. Special needs are not easy. We all could find something about ourselves that is not easy but when it is your child struggling you feel so helpless.

A week ago I once again found myself doing mindless google-ing. I ended up on YouTube. I pulled up videos of children with mitochondrial disorders. I bawled my eyes out! Such courageous stories. I was once again searching the faces of the children for one like mine. I don't know why I torture myself with this quest. I am sure this is human nature, always needing an answer. Today I called Mayo Clinic, yet again in search of the answer. The woman on the phone told me the results were back from Baylor College and that she would put in a request for the doctor to call me. I did this a week and a half ago as well and still have not heard. I check the mail every day even if it is after an 11:30pm shift hoping the mailbox holds the key (Mayo tends to send letters instead of making phone calls, at least this is our experience). As of yet no magical answer.

I look at my child every day hoping today is the day he smiles or today is the day he sits on his own. By the end of each day I am defeated. I forget to see the other awesome things he does like whimper to me when I am folding laundry in an attempt to get my attention. Or like when he puts his head on my shoulder for a moment of rest. These are the moments to treasure. I do treasure them but then torture myself when I realize I didn't spend enough time holding him that day or didn't spend enough time practicing his therapies. That is when I feel like I am failing him. With Lauren it was all part of the normal day to day routine. With Logan there are many things we have to make a conscious effort to put into the schedule.

I know I will continue to search and will always struggle with "mother's guilt". I just hope that putting this down on "paper" so to speak will help me move quickly through the hard times and joyfully through the wonderful and magical ones. We may never have that answer, and I may always look at other children hoping for the answer but in the mean time I hope to enjoy every day and every milestone with my very special son. He is an angel on earth!