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!

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!

Logan has the crud!

Well I have been sick with the "crud" since monday...fever/chills, body aches, sore throat. I tried to keep it away from the kids but it looks like Logan caught the "crud". He has a fever today. Is coughing a little more than normal and is just plain out of it. He keeps looking at me like "Mom, can't you make me feel better". I just pray this isn't one of those colds that spirals into pneumonia. I am going to New Orleans for work conference tomorrow and worry about him. I keep running worst case scenarios in my head. I have to keep reminding myself that Joel and my sister Jackie are plenty capable of handling a sick child. Plus we have lined up many different options when it comes to Logan getting sick. I have a husband who I have trained to be a nurse! He is great at it! Please send lots of prayers Logans way this week. Any illness for him is very nerve racking because we worry what could happen if he has trouble breathing and is too weak to cough. Some days I wish I could put him in a bubble to protect him from everything but most other days I just wish I could take him out to do what most 16 month olds do. He has yet to enjoy the new snow on the ground. I am sure the spring and summer will hold lots of outings and I can't wait!

Neurology follow up

We went to the neurologist for a check up/check in. He didn't have much to say other than "I am so sorry" about fifty times (Yes I am exaggerating!). No MRI needed because he doesn't think the risk of the procedure (putting him under) would outweigh the benefits. He said that even if we did the MRI we wouldn't find anything we could fix. We would probably see that his brain is not growing like it should. His head circumerance at 15 months compared to when he last checked it at 8 months is falling on the growth charts. It has grown, but for the persepective of the chart, it is not even close to what it should be at this age.

We talked about Logan's leg and arm tremors. I described them as being spastic movements that resolve when the extremity is moved to another position. He then further described it as clonus which is a series of involuntary muscular contractions and relaxations. He said it is all related to his undiagnosed metabolic problem. Not really anything we can do at this time other than reposition. We haven't been too worried about it because it does not seem to bother Logan but it is nice to know what it is.

All in all I walked out of the appointment sad. It is so hard to see another doctor give you that look of sadness. That look of helplessness that there is nothing they can do. He said we have lined up a great team for Logan which has been something I have heard time and time again from many doctors. That makes me feel good knowing that Joel and I are trying to provide the best for Logan.

As for our results from Mayo Clinic, we should hear back any day. Our neurologist said that skin biopsies take a long time. I will wait till the end of the month and if I don't hear by then I will give them a call.

On a happy note: Logan is now responding to his name. If he is laying on the floor with his head away from you he turns it and looks at you!! What a huge accomplishement for him. He is working so hard everyday and I know he gets frustrated when he can't do things. Lauren has been a trooper through it all and is such a proud big sister. She exceeds my expectations every day.

Thank you, thank you, thank you for everyone's support. All the kind words via facebook, at work, and on the phone have been wonderful. It is so easy to become isolated. I will continue to post updates and hope to have a Mayo Clinic update soon!!!! Happy upcoming Valentines Day!