I know I have been a little absent around here, but I just have not been able to think of what to write about. We have not done anything too exciting. Here is a quick list of what has been going on with us.
1. high school band concert – It was Emily’s first concert with Granville High School. They did an awesome job, and we are looking forward to the next one.
2. last week of this session for the little one’s swimming lessons.
3. hematology appointment for the little one – standard appointment with nothing new to report. numbers are good.
4. pain clinic for Hannah – not too encouraging but I did make her happy with a strawberry & creme frappuccino.
5. Friday night fun with the little one – they big girls were at teen night and we took the little one out for dinner and games. we tried a new food for us – guacamole. i know, we really liked it.
6. Emily and I were back at the farmer’s market. She had been off because of various commitments and I took off for the little one’s birthday. We had a good week. Emily learned that granola sells quick at the market.
7. Hannah was inducted into the National Honor’s Society. She was not sure if she would make, but she was very excited that she did.
I picked up these shoes for a steal this week. They remind me of shoes my dad use to where when I was a kid. It was a sweet memory.
Emily in her dress she was so excited to wear at her band concert.
The last time we were at Children’s for a treatment, the social worker mentioned to me about Team Impact. She wanted to know if she could nominate Rae for the program. Team Impact matches children with terminal or chronic conditions with college teams in a sport they love or wish they could play. I didn’t know if we would get accepted or even be matched.
A fews weeks ago the organization called me to get more info on Rae and what she likes and enjoys doing. I was not sure if they would find a college that would want to partner with them. A little over a week ago they called me and told me that the Denison women’s tennis team would love to have Rae as a “member” of their team and to partner with Team Impact. We were excited since we already knew a member of the team.
I am not sure if all the publicity stuff is done, but we did go watch the team’s first home match last week and cheer the BigRed on to a victory. Rae got to meet the coach and several of the team members. The girls gave Rae a couple of t-shirts as well. They are looking forward to getting to know Rae thru different things. She is also looking forward to being on the court with them and hitting a few balls.
Thank you Team Impact for what you do to help kids get their minds off of their illness.
I thought I would give you a quick update on the little one’s and Hannah’s health.
At the beginning of the summer the little one started on a new medication called Sirolimus to see if we could prolong the time between IVIG treatments and hopefully eliminate them. When I talked to the nurse they told us that they were getting good results with this medicine. We were nervous about trying something new, but we knew she was ready for a break from all the sticks and hospital stays. So far it seems to be working. She is not needing weekly finger sticks unless we think there is a need for it. We do know she is not a therapeutic level yet, but she is on her way. We go back in a week to check to see how it is working.
Her seizures are still pretty much under control as well. She has had 2 episodes since we have gotten back from our trip. We think they happened mostly due to her growing up. Sadly, because of this they had to increase her medication. She is such a trooper with all the medication she is having to take.
Hannah is doing ok as well. It has been a year since we started on the journey to figure out what is going on with pain issues. A year later, we still do not know. She works through her pain daily. She has played through it during her tennis matches. She is also still going to the pain clinic at Children’s. She has good days and really bad days. We pray that God will miraculously intervene and take her pain away. We are not sure why he has chosen her to go through it, but we do hope God will use it in some way. She is doing her best staying active and not letting the pain take over her life.
The week the older girls have been at youth camp, and the little has been home again with out them. Thankfully tennis camp was this week and her numbers are good enough so we signed her up. She usually just does tennis several times a month, but this week it has been 3 hours a day everyday. It was a little hard for her to understand what tennis camp was, but now she loves going every morning, and misses it when it is over.
Her tennis game has improved in just a few days. It is just amazing to see this little girl out there playing and having wonderful time.
Last week we had a busy couple of days of doctors appointments with Rae. In addition to her weekly speech therapy, she had her checkup with her neurologist and ophthalmologist. Her neurologist is just amazed with how well she is … Continue reading →