It's been a challenge keeping Jaden entertained. To be honest, I've just had to let him watch TV and play video games, much like our time in Durham. I'm frantic just trying to keep up with everything and there just doesn't seem to be enough hours in the day to get everything done.
We continue to go to clinic every 2 weeks, although when Nurse Sherrie confirmed that Jaden had CMV again, we went back to weekly checks to monitor the virus closely. As stressed as I was to hear the news, I was elated when I was told that Jaden was being put on oral Valcyte (Valgancyclovir) once a day. This makes our lives so much easier--it's just the addition of one and a half rather large pills once a day. I was so relieved that he didn't need to get IV meds for it because it would have been near impossible to administer it myself, or worse, take him into clinic twice a day.
Jaden has had his share of bumps, bruises and close calls. Just last weekend, he bumped his knee pretty badly as he dove for a ball in our backyard while playing baseball with Guri. Luckily, once the knee was iced, the swelling went down fairly quickly. Guri tells me the bump was size of a half-dollar!
Then there was the big blister on his index finger from holding the golf club too tightly. Guri took the boys to the driving range and has done an absolutely amazing job keeping Jaden active and entertained. I don't stand a chance when it comes to athletic ability or sports knowledge. I've been told by Jaden that I pretty much "stink" at most sports (or at least am not at par with his expectations!).
To top it off, we had to run an errand at the mall this weekend (i know, i know--mall on Memorial Day weekend was a big NO NO, but we went Monday evening hoping for low crowds) and while I stood in line waiting to pay, I saw Jaden walk up with a half-empty glass of Strawberry Frapuccino from Starbucks. I was terrified because he is not allowed to have any drinks from public places that use blenders or other equipment. What's worse it that when I told Nurse Sherrie, she first reassured me that he wasn't the first and won't be the last to have done this, but then reminded me that the bigger concern was the STRAWBERRIES in the drink. Berries hold a high risk of infection since they cannot be washed or peeled. They are the last fruit Jaden will be able to have. Jaden still claims he was unaware of this restriction, but I think it's his way of pushing his limits and revolting! Since this little incident, I have been asking Jaden multiple times a day if he feels okay. So far so good, but we're not out of the woods yet. He has been complaining of tummy aches, but luckily they seem to disappear once he goes potty!
So, lots of activity, and this was just the latest from this past weekend! As far as labs go, Jaden still completely melts down when they try and access his port. I do put Emla numbing creme on the site at least an hour before he's poked. Jaden still tells me he feels the poke, although I think he's more afraid of the notion than the act itself. He works himself up pretty well each week--tears and all.
Jaden's counts continue to look good. His chimerism was checked the week before last, but only a high level test was run. Apparently the HLA lab at Children's Oakland is having some issues with the DNA samples sent over from Duke. So, all I was told was "things look pretty much the same". When I asked about the lymphocyte count, I was told they didn't have the breakdown, sending me into a complete downward spiral. What's the point of running this test if we can't get the exact data we're after? We are looking at a very specific subset of cells, mainly the lymphocytes, so getting an overall number is pretty useless in my mind.
Luckily, Dr. Walters happened to be in clinic that day and said he would like the test re-run as soon as possible. Given the fact that we had to draw labs again this past Tuesday for CMV and other testing, we were able to re-do it at that time. Nurse Sherrie even came in to do a cheek swab for DNA on Jaden to get a better sample for the HLA lab. She said if it doesn't work, we'll have to bring Gia into clinic and do cheek swabs on her. Just try it, sister! You haven't met my little girl yet. I can't imagine trying to put what looks like a miniature bottle cleaning brush into her mouth. She'll go postal and start smacking everyone!
Jaden has also started home-schooling as of last week. We were told that he needs to be in school while it is in session for legal reasons. Fortunately it's just for another week and a half. Once again, his teacher thinks he's well beyond first grade level. She is also a substitute teacher and said the work in first grade would bore Jaden. She told me today how quickly he picks things up and how he wants to go from one task to another, absorbing everything on his way. I asked if she thought he was a candidate for GATE (Gifted and Talented Education) and she told me he was. I've always had a feeling about Jaden. Not that Devin is any less brilliant, but Jaden has the patience and focus to get tasks done. Devin is still working towards that goal.
Speaking of Devin, I am so impressed with his progress in school. He's been bringing home lots of perfect and near perfect scores on his assignments. It's good to see him really taking school seriously and even enjoying the process of learning. He's always been a very inquisitive child and he absorbs everything around him. He's also ultra sensitive, so I have to be extra careful with him. We've been butting heads lately, mainly because I'm trying to instill a valuable lesson about time management into him, especially with all the year end assignments and extra-curricular activities coming to a peak. Unfortunately, I've stooped to screaming on many occasions just so I'm heard. This just causes him to rebuttal and leads to a shouting match. I've got to rethink my strategy with him. He's a great kid with a great big heart.
Getting back to Jaden and his constant chants of "I'm bored!", it's been quite a challenge balancing all the restrictions placed on him with the need for him to get back to his "normal" routine. He has made friends with some of the siblings on Devin's baseball team and has a good time playing with them as his older brother and his teammates get through 6 innings. Jaden is also pushing his limits. Not only does he refuse to wear the "duck mask" (tighter fitting mask recommended by CHO), I frequently see the basic "Mickey Mouse" mask on his chin. He remember to put it over his mouth and nose as he approaches me, unaware I've been watching him all along. I have to continue to explain to him that he is risking his health for short-term benefits. This is a difficult lesson to teach a 7 yr old. I'm just praying that the frequent hand washing is enough to keep the infections at bay. I hold my breath each time I see him playing with more than 2 kids, even though it's outdoors and he has clearance to have play dates. He's just not allowed to be in "crowds" of people. I just think I'm ultra-paranoid and that the word "crowd" is subjective!
I finally did take both boys to see How To Tame A Dragon in the movie theater last Wednesday. The 2pm show was ideal in that there were only 2 or 3 other people in the theater. When I asked the attendant about slow times, he told us we were in the midst of it. So, Wednesday afternoons have now officially become movie days--at least until school gets out in the middle of June. There's so many great children's films being released over the next few months. I look forward to sharing this time with my boys, even though we'll have to wait several weeks before we can see the predicted blockbusters.
Meanwhile, with Guri's mom leaving for LA in another week and a half, I've been frantically looking for a regular babysitter to help me a few hours a week. I'll need the help so I don't have to schlep all three kids to clinic on Mondays and I'm also hoping to be able to get back to my workouts at the gym one of these days! We've been interviewing candidates, but it's quite a daunting task. I don't think anyone will measure up to our expectations when it comes to taking care of our kids. We'll just have to take a leap of faith and hope we end up with someone that can not only manage all three monkeys, but also keep them engaged and entertained while he/she is here.
I'm doing my best to take care of each child, emotionally and physically. I think I really need to spend more one-on-one time with each of them. I feel the pull and clinginess coming from each individual and I need to act appropriately, although I'm so exhausted at times, I have very little left to give. I think I'll also use the sitter to manage the other two while I do the "mommy and me" individual time with each one.
We are planning our return trip to Durham for Jaden's one year studies. We're hoping to go back the week of July 12, but with Jaden still on immunosuppressants for the foreseeable future, we're at the mercy of corporate flights once again. I'm hoping we'll luck out and the flights will be available when we need them. I don't know how all the testing will be scheduled at Duke with all this uncertainty.
That's about it for now. Lots going on. I'll try to update as often as I can. Looks like my original plan of daily has turned into once a week and now once every two weeks. Hopefully as things settle down and we get back to our regular routine, I'll free up some time to "chat" with you all!
Until next time, keep Jaden in your prayers. We cannot wait until he's able to do all the things he was able to pre-transplant. I want to see him hitting those balls out of the park, taking that last shot before the buzzer rings, and catching up with the rest of his Tae Kwon Do class as he works towards his black belt. Most of all, I pray that his lymphocyte counts skyrocket so that he can start school with all his friends this Fall. That would give Jaden a much-needed morale boost and assure him that he will once again lead a "normal" life!
0 comments:
Post a Comment