Again. I feel like I keep falling so far behind. Last saturday we had a garage sale. The kids set up a table and sold "Muffins for Mito". They did well and enjoyed spreading awareness about Mito and their little brother.
The week started with a rough Monday. My little man had his renal ultrasounds and his appt with the surgeon. His kidneys look the same, a touch larger, but not scary bad. His surgeon is still not comfortable operating and is also not comfortable stopping the antibiotics. Eli has been on them since 3 days old and will probably be on them for a long time to come. They are helping prevent infection, although they do cause some risks as well. The surgeon was concerned though about his testicle surgery. The left one has already tried to go back up and has shrunk considerably. The right still can't be palpated although we know it's there from pictures at the last surgery. He is afraid to try and re-operate on the left as he's afraid touching it will cause it to break off. He does however want to operate on the right. He wants to go in and attempt to pull it down. He isn't confident however that it is salvageable at this point after being inside Eli's body that always runs hot because of his autonomic issues. He will either remove it or lower it. He's hoping it's still partially good as Eli needs those hormones since his pituitary gland isn't functioning. We shall see. He has scheduled the surgery for January 3rd. He wants all the other docs contacted so they can join in and combine under his anesthesia. Eli can only be under so long so we will back to prioritizing surgeries. Something we have had to do many times before. He will as always reserve a bed, and we will have a full sit down with anesthesia beforehand.
On Tuesday Eli had the orthopedic surgeon. &%^#$*&%$#*....that is how I felt about it. She says his hips are good BUT his bones are improperly shaped at the hip AND knee, that his hypotonia is causing major issues AND that his achilles tendon is way to tight, BUT walking isn't important for a kid like him and we can just worry about it when he's older or he can just learn to compensate for it. I fired her and DEMANDED a new doc. I told her that just because he has mito that he deserves EVERY opportunity to do basic life skills like walking. I have NEVER been so angry at a doctor. It was clearly not a good experience.
Eli had PT on Wednesday. This was his 1st time going into the heated therapy pool. The first and last time that we took Eli swimming he had alot of issues maintaining his body temp so we never took him back. He did great in the therapy pool and after a bit really seemed to enjoy the water. He will try again in a few weeks.
Today we again had the garage sale. The kids didn't have school so they got to help out. They again did their Muffins for Mito. They did amazing! Towards the end of the day they had 1 muffin left. We saw a man chatting with them. Next thing we know he is walking up to us, muffin in hand. He talks to us about how Emily told him about Mito and Eli. He said how strong we must be, and how he was thinking about us and would be praying for us. He told us to stay strong. He said he couldn't donate much but he gave the kids some money. When we walked up to Emily she was crying. The man had given her $100 for 1 muffin. Bob walked across the street and thanked the man even more than we had originally. The man cried and chatted with Bob for a bit. We are forever amazed by the people we have met along this road. In 2 days our kiddos sold 10 dozen muffins and earned $190 for the UMDF and Eli's medical care! We are super proud of them!!
Alot of changes have been going on around our household this week. We are prioritizing and reorganizing. Some things are having to come to an end and some things are being added. The stress level has hit the critical point. We are beyond exhausted and so is Eli. We are having to end some things that we didn't want to end. It's been a long road coming and we've had to really talk and decide what is best for all of us.
Eli has struggled a bit today, his allergies are again flaring up. He's been coughing quite a bit which has resulted in alot of gagging and dropping of his sats. This next week he meets with his Sleep Medicine Doc/Pulmonologist. We will hopefully be working out a better plan for Eli's BiPAP and sleeping issues, as well as the restless leg syndrome, and a full plan for his upcoming surgery. We are also hoping to get this last round of genetic testing back. He has an appt with his endocrine doc coming up, alot of phone calls with docs for his upcoming surgery, and some very long talks with his hematologist to discuss how we want to handle this surgery and the risk of clots with Eli.
Emily ~ She's staying busy. She has turned into quite the advocate, event coordinator and fundraiser. She is working hard with her Mito awareness, has been actively involved in student council and has been selected to help run the United Way campaign at their school this week, as well as all of the fundraising for her trip later this school year. She's also still enjoying choir, strings and everything else!
Jace ~ He's finishing up his 1st book for book club. They meet next week. He's been involved with the good news club at school and is enjoying that. He's enjoying his ASL class and is learning alot!
Ben ~ He's been a mess. We just finally got his meds back up to a full dose so we are hoping that helps. He's enjoying school, mostly. He's working hard in speech and some extra social skills help. He's also going to ASL class and seems to be learning some.
Ari ~ She's loving school. She has made some friends and is so excited when she gets there each day to sit with them and chat. We've been struggling some still with getting her to eat, but constantly trying new things to see if we can work thru that.
Bob and I are same as always. Like I said above we are really adjusting some things in our life. We have been working out a minimum of 3 times a week, which normally ends up around 6 times a week. I've lost 16lbs at this point, and am enjoying getting back into a workout routine.
More updates soon. I will also try to get a few pictures up soon. Tomorrow Bob and I are going on a date morning. We are heading to the farmers market and to a health and wellness fair. In the afternoon we are hoping to take the oldest 4 out to the park. We will see how the day goes!