Wheelchair Loaner

Today Logan got a wheelchair to test out for the next week. It is a slick ride with great head support. It is so small but is sure heavy! This is the model wheelchair. Gillette will be able to make customized changes to his chair when we get it in the next couple of months. This week we need to test it out and make sure it is what we want and to figure out what needs to be changed to fit him if possible.

He fits in it so well and even fell asleep in it at therapy. We took it for a spin to the park too! It has a mount on it that we are also testing out for the week. The mount has a couple options to put communication devices on including and Ipad.

I was such a proud mama when we got to therapy and saw it for the first time. He fits in it like a glove. It will be so awesome to have something to transport him in that will provide the right support and put him up at a level where we can interact better with him. It will also be great at home to have another seating option and a place for him to have his communication devices.

After the appointment I struggled to get the wheelchair into the trailblazer. I didn't realize how heavy it would be. Joel and I are going to get a little more serious about finding a mini van and the PT and case manager from our school/county suggested a ramp that we can buy to get the chair in and out of the vehicle. As I drove home from therapy I was excited and then quickly my mind began to race thinking of all the adjustments that we need to make to accommodate the new chair. I was in mental overdrive and thankfully my Aunt Michele was available to talk. She brought me down a few notches and helped me realize this is all preliminary and that we have time to get ready.

Tonight we took a walk to the park. He did great. I was smiling the whole time thinking about where a new chair will take us. I have to say I also worry that he is moving farther and farther away from the "normal" child and I worry about how he will be treated by others. I wish I didn't have to worry about awkward glances, pointing fingers, and constant questions about why my child is in a wheelchair. So far it has not been that overwhelming. I see Logan and our family as educators on children with special needs. I am always happy to answer questions about our amazing son. He teaches so many people life lessons without even saying a word.

Lauren was great with the new chair too. She did want to get in it at one point but understood that it was too small for her and that she has her own special chairs that Logan can't sit in. When we went to the park it didn't even phase her that he was in the chair. I love that she is in such a self centered time of her life!!

Update on results

I got a call from the pulmonologists office today. His cultures that were taken from the fluid in his lungs came back growing many organisms. They said if he was ill right now they would treat with antibiotics based on the results but because he is well they will hold off. No reason to give him something he doesn't need. I think we knew his cultures would come back nasty. It is amazing how his body can tolerate and compensate for it all! He is such a fighter. The doctor's office also told me Logan's lumbar puncture results were back and recommended I call his neurologist to get the interpretation of the results. Obviously I didn't push them to tell me since it isn't their specialty! I called the neurologists office and they didn't have the results but would get them from Children's and have the doctor follow up with me Monday as he is not in the office today. I hope I can keep my mind off of it for the weekend. We are pretty used to this stuff.

Logan has had a great week. We now have Kim, Logan's personal care attendant (newest girlfriend) to take care of him. We had to pull him from daycare to keep him away from as much exposure to germs as possible. It was hard to do as we love Debbie and she is truly Logan's second mom! Kim is a great addition to Logan's team!

Otherwise all is well with Logan. We hope to have him out in his wagon this weekend lounging in the yard. He is starting to tolerate the wind. I am going to have to look for a little portable fan for him because he doesn't tolerate the heat very well. If anyone has seen a battery operated fan around give me a holler!

Enjoy the weekend everyone!

Logan and the Ipad

Here is a video of Logan playing bubbles on the Ipad

Procedures

Today Logan had a laryngoscopy, bronchoscopy, and lumbar puncture. We went to Children's Hospital in Minneapolis for the procedures. Logan was placed under general anesthesia. The ENT doctor took a look with his flexible scope to see Logan's upper airway and then a ridgid scope to look further past the vocal cords and he did some washings of the right lung and obtained fluid for cultures. He gave us copies of the pictures he took. He said that Logan was "drowning in secretions" when he first looked. He said his vocal cords worked properly. He noted that Logan has very poor coordination of his swallowing. He said he does not "protect his airway very well". Anatomically everything looked great. His airway was strong and does not collapse as we first thought. This is called laryngomalacia.

So good news but at the same time a bummer! I was hoping for something that would explain why he is such a noisy breather and why he aspirates. Instead today further reinforced that Logan has muscle coordination issues and that we are still no closer to an answer. The ENT said that a tracheostomy is off the table at this point. He does not feel it is a good option and I totally agree. He talked to us about having some of his salivary glands tied off so that he would produce less saliva. That would then reduce the amount he aspirates. He said it is a pretty simple procedure that requires some incisions. He said it is something we can think about for the future. Otherwise he didn't have much else to offer.

I was upset after he left. I didn't realize I would feel so defeated after today. I was convinced that we would find something to explain the airway problems. I am very sad tonight thinking that my son may have some sort of disease or disorder that cannot be fixed. We have known for a long time that the chances of a cure are slim to none but hope and miracles always remain in the back of my mind! So we will continue to work very hard to keep him healthy and continue to pray for our little man!

Back to the lumbar puncture...so the pulmonologist worked with our neurologist to line up the lumbar puncture while Logan was put under. He had a doctor set up to come and perform the procedure after the scopes were done. They took spinal fluid for tests and are going to check a lactate level, amino acids, and check neurotransmitters. I am not sure when we will hear back but probably some time next week. Hopefully these tests will better direct the doctors to the right diagnosis. We still plan to see the genetics doctor in June. The genetics office had asked me to see if Dr. Sidman (ENT) would put in an order for them to consult while we were at the hospital but I felt as though we had enough going on today and didn't feel up for that added stress.

The procedures took about an hour. The recovery time was quite a bit longer. It took Logan about three hours to perk up to his usual self. In the past his recovery time was very short. He would always come back from post-op kicking. This time he was pretty sleepy and had a hard time keeping his oxygen saturation above 90%. So we cuddled with the oxygen and gave him time to rest. Tonight he is tired but seems happy to be home. I can't imagine what goes through his head when he is at the hospital and goes through all of this. I wish he could tell me how he feels and could tell me if he is scared or in pain. Now he is resting on his blanket watching TV. I am so happy to see him comfortable and resting. We will continue to pray for our little boy. He is our angel on earth!