Well, our trip to Cincinnati went good. We arrived an hour early! It was so hard to entertain the kids. I forgot that the hospital has gone on precaution mode... so ALL the toys are gone right now! Even in the resource room play area.... I didn't take toys!!! OH NO! Do you know how hard it is to keep a 3 & 4 yr old busy with no toys?? I was thankful for my sister! She went along and was so helpful!!!!
We started out at the wheel chair clinic area. They had scheduled us a slot just to make some minor adjustments to the chairs. However, getting in there, they realized that the chairs needed much more. Sissy's were more minor alterations, but Joey's are major. His seat is too long causing him not to be able to reach the plates where his feet are too rest. They did this some where other than cinci, explaining to us that this was because he was so small. Well, the guy at cinci looked up and said "Please please tell me you did not get that chair here." He was relieved to know it wasn't them who had done it because the chair was made totally wrong for Joey's needs. So... this lead to realizing that his repairs were going to be more extensive. So, we have a spot reserved on the 2Nd of Nov. to take the chairs back and to have them properly redone. We'll be there for like 3 hrs. they said... so taking PLENTY OF toys and videos then!
Next was pulmonary. This appointment went well also. She was very pleased at Joey's asthma control. she said that he's doing great. They are leaving meds as is. She is afraid if she lowers them any more we will start seeing asthmatic issues again. Also, because of the possibility of what is going on with the Mitochondrial/muscle disease (whatever it may be) they are going to need to start watching him for sleep issues at night. She said that muscle weakness affects our breathing and most often shows up at night... so... not cool! We'll be doing sleep studies at least yearly and sooner if we deam necessary by symptoms at home.
She is going to begin seeing sissy as well. She said that with all her allergies and her likely disorder as well, she really needs to be in. They said that hearing her story, they'll do allergy testing on her first off. If we find allergens that are removable from her life, great but if not... they'll begging periodic allergy shots to take down on the amount of meds she has to take to control her allergies/asthma etc. So... I'll be making an appointment for her soon.
OK... enough... I'm sure you are feeling overwhelmed reading our details! I know I get overwhelmed sharing them some days!
Have a great day all! ~Mindy
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