June & July
We were so anxious for June 11th to finally roll around I could hardly wait! That would be the day Caitlyn started Rapamycin, (also known as Sirolimus or Rapamune). Before we could head to Milwaukee to meet up with Dr. Kelly, Caitlyn had to go to her 6 month well-child exam. There we found out that she had an ear infection. She had been coughing quite a bit in the week or so before her check up so I knew she had a cold; however I was disappointed to hear that she had an ear infection on top of it. She was put on an antibiotic for the infection and by the time we got back from Milwaukee she would be able to have her 6 month shots.
Since Peter's mother came to stay the night with us on Thursday, the 10th, I had everything packed and ready to go by Friday morning and was able to go donate plasma while she watched Cait. Her appointment with the Oncologist, Dr. Kelly, went really well. He answered all of the questions that we had and made me feel a little better about putting her on this type of drug. He started Caitlyn out on 0.4ml and she would need lab work done the following week to see where her levels were at. After her oncology appointment we headed down to get some lab work done. Two different phlebotomist poked Cait in both of her arms and neither one of them could get any blood. I finally had to tell them to stop because the pain they were causing her was just too much for me to watch. Hopefully next week's lab appointment would go better.
We left the hospital and started driving to Janesville. Peter has very close friends that live there so we decided to stay with them for the weekend. On Sunday the three of us checked into the Ronald McDonald house located right across the street from the children's hospital. The house was large and extremely beautiful inside and out. I was in shock looking at it. The entire stay, all of the volunteers, we over-the-top accommodating with mine and Caitlyn's every need. I was thoroughly impressed and feel very blessed to have had the opportunity to stay there.
Tuesday, the 15th, was mine and Peter's wedding anniversary. We weren't able to do anything to celebrate since Peter had to leave us to go back home so he could go back to work. From there on out it was just us girls. Caitlyn was doing so well being on her new medication, but the antibiotic that she was on for her ear infection was causing her to have diarrhea. By Wednesday-ish, her diarrhea had cleared up and she was doing well. Thursday she needed to have lab work done again and after poking a couple of times they were finally able to get enough blood to run the test. At her Friday appointment with Dr. Kelly he said that he was very happy about her levels and we would leave her medication dose right where it was. Caitlyn's following labs would be done in the infusion clinic.That weekend Caitlyn started getting diarrhea again. No matter what I did for her, it would not stop. I had to buy clothes twice while shopping around Milwaukee because her diarrhea was so bad. Through the week I ended up taking her to the ER twice and both times they did nothing. They said to just keep an eye on her. Finally they tested her stool for infection and it came back that she had c. difficile. So back on another antibiotic she went. By Friday, the day we should have been able to finally go home, the medication still wasn't helping and Dr. Kelly decided to admit her to the hospital. The good news was Caitlyn's blood levels came back where Dr. Kelly wanted them to be at, so again we could just keep her dose where it was at. Caitlyn started eating more and met her intake goals every time and her out-put was getting much better than it was so on Saturday Caitlyn was discharged and we were free to come home!
The rest of June was uneventful and July was turning into a great month! Caitlyn got to go watch the fireworks on the 4th and she just LOVED them! On the 13th, Caitlyn had appointments in Marshfield to see her geneticist who we also saw throughout my pregnancy. This would be the first time Dr. McPherson saw her since she was born 7 1/2 long months ago. She also had an appointment to see Dr. Jaglen who was a pediatric orthopedic doctor. Both appointments went well. Dr. McPherson thought that Caitlyn might benefit from having a helmet fit for her head since the back of her head was still a little flat. I have decided, since the appointment, that I won’t put Caitlyn in the helmet as of yet. I will see if another month or so will change the shape of her head. Dr. Jaglen wants to wait another month or so until we talk about doing surgery to put her right hip back into place. I am getting frustrated with that situation. She has seen three different orthopedic doctors and they all have different ideas as to when to do the surgery. On top of that there are complications with doing her surgery since she is on this chemo-type drug. Then trying to put a spica cast on her body with her left leg being as bulky as it is will be complicated in itself. Needless to say, I'm just frustrated and just want to know what is going to happen and when. I hate the "not knowing" of this situation. Hopefully by August we will know more.
On the 14th Peter and I drove back to Milwaukee through a horrible storm that produced three tornadoes! Two of them crossed the interstate within minutes of us being there! We made it safely to the hotel and Thursday morning was Caitlyn's lab appointment. After her lab appointment we took Caitlyn to the Milwaukee County Zoo. I had never been to a zoo before, so I guess this was for me too! I had heard such great things about this zoo but I was actually pretty disappointed by the experience we had. Most of the animals weren't there when we walked by to see them. There were some animals that were cooped up in fairly large glass cage systems when I thought they should have been able to be outside like the other animals. We ended up leaving early since I wasn't really enjoying myself anymore, Caitlyn was starting to get a little crabby, and I started to not feel well. I'm still glad we went, hopefully when we go again it won't be so hot out and we can all just relax and enjoy the day.
Friday's appointment with Dr. Kelly was great! He was so happy to see that she was doing so well. Here Rapamycin levels were a little low, so he upped her dose to 0.5ml and her CBC came back completely normal. Since there is a risk in KTS patients having blood clots and being on Rapamycin can cause kidney issues it is very important for her CBC to come back normal.
The rest of the month has gone really well. Caitlyn’s Birth-3 team is very happy with her physical and cognitive progress that she has made. The day she started Rapamycin in June is the day she first rolled over! Now we can't stop her from rolling all over the place! She is pushing herself up on her hands now and trying really hard to scoot. I'm just so happy with her, she is completely surpassing all the expectations that I had for her in the beginning! I was so worried that she would never roll over, or crawl, or even walk, but for right now it looks like she is really going to be doing all of those things! What a wonderful feeling it is to know that your child is going to meet all of those developmental milestones!
