new chair

Friday March 13, 2015

Aaron finally got his new chair today. He LOVES it. It has wheels and he loves to be pushed around the house. The faster the better. He is so much more comfortable in it than in his stroller or wheelchair. I am hoping to be able to get on for Taevon too. It makes moving them around so much easier and faster. They are both getting bigger and heavier, and Taevon is getting so long. It is getting harder to carry him around so a new chair with wheels would certainly help me out!!

Taevon really enjoys being in his stander. He and Aaron were so cute sitting next to each other. They have their own way of communicating and they enjoy being together. Although Aaron does get tired of Tae shaking his rattle. From time to time he gets close enough to Tae to take his toy and throw it on the floor which causes Tae to burst into tears. Such a little bully...

doctors

Tuesday March 10, 2015

Aaron had an appoinmtnet with Dr M (GI) this morning. It was going great until he told us he was leaving in June!! All of our favorite drs are or have already left. We will be so sad to see him go, but are so thankful to be able to transfer to Dr G (GI) in the same location. Even though we are so busy and have tons of appoinments I am very grateful for all of the amazing Drs here. We are so lucky not to have to travel back and forth to Indy to receive exceptional care. Twice a year with Keag is enough!!

results

Monday March 9, 2015

Dr O (hematologist) called this morning. He said that Aaron's PTT was still very delayed. He definitely has a clotting factor deficiency. It did almost correct itself with the mixing studies but not quite so he feels that there is a inhibitor going on too. Aaron will have more blood work and they will check for factors 8,9 11 and 12. Dr O also believes that a recent antibiotic for a sinus infection blocked the absorption of vitamin K.. I forgot to ask when I am supposed to give his this supplement if it is only when he is on a antibiotic or when I give his a stress dose of his Hydrocortisone. I also need to find out exactly how much he needs to take. For right now he is doing fairly well. He hasn't had a bloody nose in a few days and most of his bruises are gone. He is really constipated but we see Dr M (GI) tomorrow morning.

 This is a slow week with only 2 appointments and therapy. Nicholas is finally feeling better and went to school this morning. Taevon is back to his normal happy self. Thank goodness he didn't end up getting what Nicholas had. He had a big seizure and it took him awhile to bounce back this time. Keagan is still having headaches even on this new med. I need to make his appointment with the ENT to see about his tonsils and adenoids. I was sick with the flu this weekend and still not feeling the best today so it will have to wait until tomorrow.

appointments

Wednesday March 4, 2015

Today we had 2 Dr appointments. Tae saw Dr M (GI) this morning He has grown 1.5 inches and gained a pound in the last few months. Everything looked great so no changes. He did say his platelets were elevated (590) but that he would check them again at our next appointment.

Aaron saw Dr O (hematologist) this afternoon. He and everyone in his office was so nice. Our nurse was someone we had gone to church with when I was younger. We still don't really have any answers to what is going on with Aaron. He had more blood taken today and they should call tomorrow with the results. He said it could be a vitamin K deficiency or a deficiency in a clotting factor, or something caused by the virus or a medication. Dr O did say that he probably needs to take vitamin K when he gets sick to help with clotting. He was going to look up his labs from 2010 when his platelets were low when he was so sick in the ICU. I guess we will know more tomorrow.

sickness

Monday March 2, 2015

This week has not started out very well. Nick was up all night sick. Aaron did not sleep well at all and when I went to get Keagan up for school he burst into tears. He said that his head hurt "little bad". He had a migraine last night and it didn't get any better during the night. I gave him some of his headache med, tucked him in and he went back to sleep. He said he is feeling a little better now but his head is still hurting and he is still in bed. Nick is now throwing up and has a high fever. I am hoping that he is not getting strep throat.

Dave and I planned on spending the day together. Were going to watch our DVR and make pizzas together for lunch. Well plans change. I ended up taking my mom to the hospital with my brother to see my grandma in ICU. She isn't doing very well.

Once I got home and checked on all the boys, changed diapers and gave meds we attempted to watch a show again. Then I got a phone call from Dr T (Keagan's Neuro) she informed me that Keagan had Sleep Apnea and that it was pretty bad. He is now going to have his tonsils and adenoids removed. She said this may help some and after they are removed we will decide what needs to be next. This came as a total shock. I NEVER thought he had Sleep Apnea. So now to make an appointment with the ENT and get this started. Oh my do I have a lot of things going on. I just sit back and think about how lucky I am to be called mom! It is what I wanted most in the world!! Things will get done and it will slow down once again. I just take it day by day and cherish every moment with my boys!!

our weekend

Friday February 27-Sunday March 1, 2015

We had a great weekend. Friday after I put Aaron and Taevon to bed we played games. I LOVE game night. The deep belly laughs from Nick and Keagan are priceless. My favorite games to play with them are Apples to Apples (Disney edition) and Disney Headbands. They are so funny and they love to act out the characters. I could play games with them all day every day.

Saturday was a very relaxing day. Taevon woke up and was feeling much better. He slept through the night and never even moved when I gave him his pain meds throughout the night. He still didn't really move much during the day but I did get a few of his precious smiles. Saturday night was our movie night. We watched Big Hero 6!! The boys saw this movie in the theater and loved it so much we bought it the other day. The boys and I made Baymax cups for our snacks. They turned out so cute.  I am enjoying every moment we spend with the boys.  I know it won't be long before they will be going out with friends on the weekends.

Sunday Taevon woke up in a great mood. He was so excited to see me when I went in his room this morning. He started to stretch out his legs today. I tried to give him Ibuprofen but he started to cry some so I went back to his pain meds and he is much more comfortable. Aaron is a little "off" today so I am not sure what is going on with him. His temp is a little low and he isn't his happy normal self. He is also getting  another rash on his face which usually menas he has some sort of virus. Hoping he is able to fight through it without a trip to see Dr C. He has an orthtotic appointmnet on Monday, a GI appointment on Tuesday and a Hematologist appointment on Wedensday. Keagan also has an appointment Tuesday and Taevon has one on Wednesday and Friday. I really don't want to try and squeeze in another trip. I just never know day to day with Aaron.  We just enjoyed our time at home together today. It was a video game and pajama day!! Love the weekends when we can just stay at home, although I am looking forward to the warmer weather so we can get outside to the playground.