Tyler made a really cute video of this year's ice rink...It's at the very end of this post. Check it out!
October 19th 2015-- BMT clinic for Alice
|Alice holding Isaiah while waiting for the lab to call us back...doesn't she look so brave.|
|The whole gang came along.|
|Loving her time in clinic.|
A big day once again. Alice was advanced to long term clinic. The Team of doctors and nurses that have followed Alice feel she is ready for long term clinic...meaning she only comes once a year for follow-up. Last time we reached this point she gave us a curve ball--however, we feel more prepared this time. Although with that said, when we arrived home from BMT clinic, she began running a fever in the evening and felt ill. Such irony. Seriously??? I wonder if Alice just loves the hospital so much that she can't let it go. ;)
More than likely we expose ourselves to new bugs every time we go to the hospital. However, this time the turn over was too fast. I doubt such things could present so quickly. Actually Isaiah hasn't been feeling well, including fever and runny nose. It's going around. So, Alice get feeling better soon!!.....and she did! YEAH!!!!
Lab results from clinic.
Everything looks fantastic. Her white cells, red cells and platelets are all normal, including liver function. I am always keeping a keen eye on her liver function labs. I was thankful and relieved her liver tests were good. We still await her iron levels.
Alice's chimerism continues to improve. Currently her whole blood is 100% (97% donor #2 and 3% donor #1), T cell chimerism is 93% donor #2 and 7% donor #1, B cell chimerism is 100% donor #2.
The closer her chimerism becomes all donor #2 the better. These numbers are very good and we are continuing to see them going in the right direction. Yeah!
Oct 23rd 2015--Ophthalmology Clinic
Just a simple quick follow up today to check on Alice's eyes. As I have mentioned in a previous post, she has some cataracts in her eye. It affects her vision very little so removing the cataracts isn't necessary at this time. There are risks and side effects with removing cataracts. So we will just watch it for now, if ever it interferes with her vision then we will consider the options. She requires follow-ups every 4-6 months at this point.
How did Alice develop cataracts? We believe it was caused either from the many systemic steroids she was taking or the varicella virus (chicken pox) that had gotten into her eye.
Does Natalie have Cholesteatoma? We found a white mass like in Natalie's ear(s). It looked very concerning and of course everything we could find online indicated very similarly as cholesteatoma. Within a week or two we were able to have the ENT examine her ears. It is in fact a white mass in her middle ear, thankfully not cholesteatoma, but instead it is Myringosclerosis. Myringosclerosis is "healthy tissue degeneration and calcium deposits which form on the tympanic membrane (eardrum). In addition to the formation of calcium deposits, the ear drum, which is normally thin and translucent, may thicken, harden, and lose it's transparency and mobility. This is thought to be caused by chronic inflammation in the middle ear which stimulates the production of extra tissue cells."-about health
It is no surprise Natalie has developed this, considering the amount of inflammation, fluid and infection that have plagued her ears over the years. If it gets so bad that her hearing becomes severely impaired, they can surgically remove the calcium deposit, but with risks of damaging her inner ear. We will continue to keep an eye on this.
Fall/Halloween October 31st 2015
A fun holiday for sure...Tyler's dream has been to host a Harry Potter Halloween party. So we did. It was fun to have family over for good eats and homemade butterbeer. The little ones practiced their spells on our magic hanging candles...we played guess the Bertie Botts Jelly Bean flavor, pretty gross. Good times it was...and there were some great costumes...and I don't have any pictures of this fantastic party. :/ opps!
|I took the three little ones to a little corn maze and pumpkin patch. Isaiah was memorized by this pig.|
|Building up the courage to get closer.|
|And he did it...he touched the pig...it wasn't going anywhere quick, perfect for a little guy like Isaiah.|
|He was trying to say 'no more pictures mom', I was driving him crazy with my camera.|
|little harvest ride|
|racing through the corn stalks|
|Overlooking the corn maze.|
|I managed to get him to look in my direction...I consider it a successful picture.|
|Matthew made this for his school project|
|Old man Blair|
|School Halloween parade, he definitely got the most laughs.|
|This is not a wig.|
|Alice as Disgust from Inside Out|
|Natalie's favorite Halloween treat, Black Cat cookies...this year I made them Gluten Free.|
|I made six apple pies, and had plenty of help. I actually left out some dough for them to roll out and let them think they were helping make the pies. I love the "help" but it sure makes for a big clean up job.|
|Oh I wish I could stop time and keep my kids this age forever.|
|Halloween night...they were on their own for costumes, so it ended up being what was warm and easy.|
|Little Red Riding Hood|
|Another year as a Carebear|
|Natalie had one goal in mind...CANDY, and A LOT of it!!|
|Alice wanted fake nails, so this is how she managed them. |
And apparently the only tape she could find was electrical tape.
Natalie's 12th Birthday, 2015
Natalie is 12? What? Who would have known all the things she would experience before her 12th birthday. Time to celebrate twelve strong years Natalie. She choose to invite some friends to go to dinner and the skate rink. It was a blast.
|Natalie's favorite food...Chinese|
Bethany, Shelby, Lizzie, Natalie, Haley, and Lydia
|Kymball, Tyler and Natalie|
|Mount Timpanogos Temple|
|Lisy and Natalie|
First Thanksgiving in a long time that we could be all together. Holidays for us over the past 4-5 years have been either in the hospital or some of us stay home with sickness, while the others celebrate. Being together is definitely the best option.
|Natalie won our Thanksgiving turkey this year...she took first place in the school's turkey trot, she was up against some stiff competition in the life skills class. ;) It was cute, and she was so proud of herself.|
|This is how we decorate for the holidays, at least for Alice. Her side of the room.|
|And this is Evie's side of the room, each with their own touch. |
Who would have thought--gift tags, should I pin it? ;)
|Rudolph lives at our house.|
|The nativity at Grandmother and Grandpa Fishes house.|
|First snowman of the season|
|That snowman makes Isaiah look so big|
|The real Frosty the Snowman|
|Alice and Evie at dance class|
|Evie is also in dance class, they are in the same class..it is so cute. Evie insists that the tights are supposed to go over the leotard.|
Christmas break this year (2015) was awesome. Tyler managed to stay out of the ER, unlike the year before, so instead he built an ice rink and we took full advantage of the extreme cold spell over the two week break. We spent most of our time out doors bundled up, this video has all the fun details.
In fact we were able to enjoy the rink for several weeks....winter (2015-2016) could not have been more perfect for a backyard rink.
Tyler is so good when it comes to building lasting memories...he is always thinking ahead, imagining what the kids will remember when they are older and how it will shape their adulthood....he wants them to have the same wholesome childhood we had just one generation ago....in this ever changing world.