Just wanted to let everyone know that Brandon did very well. He’s feeling great. He slept down to the OR and right thru the knock out drops. : ) It only took about 25 min. and we were on our way back up to the room. He was awake right away and talking. The only thing was that he was dizzy for about 30 min. but other than that it went great. Now comes the hardest part, making him lie still for 6 hours. I gotta go now. I’ll talk to all of you soon.
Sharon
October 13th, 2008
Good Morning everyone,
Brandon will have his 1st Spinal treatment at 2:30 today. We’re going to try and get a good breakfast down him as he can’t have anything to drink or eat after 8:30. I do believe it’s going to be a long day for him. I’ll let you know how he does. Thanks again for all you comments, it puts a big smile on his face when he hears all the messages you guys are sending him.
All our love,
Brandon, Sharon & Tina
October 13th, 2008
Hi everyone,
Yesterday (thurs) went really well with OT & PT. He got to stand up in a machine today and play catch with Owen, his therapist, he loved that. I can’t imagine what that must have been like for him. He’s never stood up and played ball before. He told me that he felt stronger today, and I watched him walk around the bed holding on. The bed’s are really low to the ground here so that made it easier and it was like when a baby first starts to pull himself up to the couch and sidesteps along it. But I haven’t seen him do that in a long time. So today was an awesome day for him. When he was having his IV Treatment on Wed. he asked the nurses to please hurry up so he could walk down the stairs. The IV room is upstairs so he wanted to walk right out of the room and down the stairs. It was kind of cute, yet sad. But he understands he’s just very hopefull like we are. I think his first Spinal will be on Mon. from what the nurse’s were saying. We will have a free weekend, we have some plans to do some sightseeing. Talk to you soon.
Sharon
October 10th, 2008
Good morning everyone,
It’s 6:40 am on Thurs. here. Brandon is sleeping in today, finally. He didn’t have a very good day with his OT yesterday. They ended up doing Accu-pressure instead. He got too upset about the needles. Hopefully today will go better. Anyway, we had a lot of trouble getting in the IV, it took about 6 tries as it wasn’t a needle they used but a very small tube. He was angry about more needles and wouldn’t lay very still so it kept coming out. It was so hard on him, but we finally got it in and the Stem Cell treatment went great. We were allowed to go in with him and Grandma Tina was allowed to hold him on her lap. I think it also helped that baby Jakob (9 mo. old) was in there with him and he was sleeping right thru it. Brandon was thinking that they had to put another needle in him and we were explaining to him that it was just being put in the tube that was already there. He did real well afterwards, no side effects. We have talked to people that said their children had gotten hyper afterwards but nothing like that happened. So afterwards we took him to a little store here in the hospital and let him pick out some ice cream. We’ve been going for walks and to the market since we’ve been here and we were told about a little park just a few blocks away that we might try to go to today. It looks like it might rain today so we’ll have to see.
Talk to you soon,
Sharon
October 9th, 2008
Brandon had his 1st day of Accupuncture yesterday (Tues). It really didn’t go well. He was very upset & it took us awhile to get him calmed down, but we finally did. It’s not so much that it hurt so bad it was just the idea of all those needles. However, it does hurt a little. It only lasted about 20 min. and he was amazed how much it didn’t hurt to remove the needles. Next we had Electric Wave therapy. That is where they put small electrodes on his muscles, he fell asleep during this procedure. : ) Later in the day he had about 45 min. of therapy. He was pretty tired by then and he took a nice long nap afterwards. All in all it wasn’t a real bad day just a long one. He will have his IV treatment today, along with another day of PT & OT.
Thank you all for sending your comments, I love reading them. It makes it a little easier knowing we can keep in touch this way. I want to say hello to Egill Helgason from Iceland. Brandon does have SMA type 3. He’s 4 yrs. old and was diagnosed about 2 yrs ago. Take care everyone and we all miss you.
Sharon
October 8th, 2008
Hi everyone,
Sorry it took me so long to post. Had a different way to get to posting and wasn’t sure how. : ) Brandon is doing great, he misses everyone, especially Taylor. We finally have his schedule for the week. He will has Electric Wave Therapy and Accupuncture every morning, and PT in the afternoon. His firt stem cell treatment will be by IV on Wed. the rest will be Mon, Wed., and Fri. and will probably be the spinal treatments. From what they are saying they will do general Anesth. for all of the spinal treatments. There a lot of families from the U. S. He’s making a lot of friends, Camden is one of them. He’s 3 yrs. old and is here with his mom, dad and 2 brothers. His older brother is here for treatment. New families come every day and they are all very nice and it doesn’t take long where you feel like one big family. We are all here for the same reason, we all want our miracles. From what I’m hearing this is worth every single penny that you have all helped us raise. Thinking of all of you every day. Love to all and we miss you.
Sharon, Brandon & Tina
October 7th, 2008
I will be managing the blog from the states. I need to talk to Sharon about how to make a post instead of adding comments. Once we have that established please add your comments to the most recent post as I will be deleting previous post as we go along to free up space so everyone can continue to post over the course of their stay. It is wonderful to see everyone following our little man. Thank you all for all your support.
We Love You All,
Papa
October 7th, 2008
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