Davin Turns 4- Happy Birthday

Yesterday, December 21st- Davin turned 4 years old!!!! Our outgoing, feisty, determined, video playing, energetic, cuddly, miracle child survived another year. He has been such a blessing in all our lives and has taught us so much. He definitely has focus and knows what he wants and is not afraid to tell us. We were so nervous the day he was born, all we wanted was to hold a healthy baby in our arms. As only in Davin style, he came out feet first and after his head was unstuck he definitely had some healthy lungs. That was a sound we thought we would never hear, and we have heard it over and over again! Davin loves his friends, family and of course video games. Although he is small he is fast and can be the most loving child we know. It is not uncommon for him to grab a strangers hand, sit in their laps and just strike up a conversation. So to our little Finn, we love you and are blessed you taught us that miracles can happen. Happy Birthday

You Say It's Your Birthday

Yes Ryan is TWO years old today. I can't believe that my baby is now a toddler- so fun. He is such a great kid and is our resident "bulldozer". His MD was very pleased with his continued growth. He is still off the charts for height but over 98% for weight and 94% for head. Yeah I know, feel sorry for us! We are going to start calling him gigantor. He is talking a lot more, however, if you ask him what his name is he will say "I'm baby". Only now has he been interested in a Binky and is fascinated with other babies. He thinks he is potty trained, and I guess in a way he is-- if you don't mind cleaning up messes here and there. I'm grateful he is still in his crib (it gives us a little more peace at night). However, since he is so big, he has to go to a toddler car seat which he can get out of easy. So guess what he is getting for his birthday. Today he has been all smiles, singing himself happy birthday to baby- everywhere we go. His grandma sent him a card with Spider man- Awesome- and then he spent several hours at Chuck E. Cheese with best friend Parker (and guests). Teaching him to be the center of attention might have it's down sides, but for today it is priceless. I'm so glad that we decided to not give up after Davin and had him in-spite of the risks. He has brought smiles to our faces, love to our hearts and faith to our souls! So happy birthday little fry, we love you!

Happy Birthday To Me

Yes, I'm 23 again! It has been a wonderful day, starting from getting a full night sleep to an uninterrupted bath. The icing on the cake was my friend Liz taking my kids for a couple of hours so I could go see Twilight by myself. It was awesome, thanks Liz! Then we had a great dinner and of course I was spoiled with gifts and food. So exciting, so fun. You know you are only 23 once (or twice or thrice or- OK I'll just stop now.) Thanks to all my family and friends for making today special! Thanks to my kids for the yummy cake. Yes you get to finish it all! Love You-

Medical Diaries

So I feel like all I have to say is medical. I really do have other things, however, not much. It is exciting that today and tomorrow there are no Md's, Hospitals or paperwork; now I can focus on Birthdays and Christmas. We had a wonderful Thanksgiving at Sari & Brett's with Trevor's side of the family. Sadly, my Aunt Delores (the aunt who was living with my parents) passed away Thanksgiving. She didn't look well at my grandfathers funeral and suffered from many organ problems. The funeral will be this Friday in my parents ward building. I feel so bad for my grandmother who in 10 days lost her husband and only sibling/twin sister. I don't know how anyone is holding up anymore.

We met with Dr. Osgethorpe the other day and he is excited to take the boys cases. He said that the boys are "famous" in his medical circle. Some Md's are frustrated they missed the diagnosis and others are just happy to know what the cause is. He also has encouraged us to look to the NIH for some answers and better understanding of the disease process. He is also not convinced that Davin's other problems are not related to TRAPS since there are not many diagnosed cases. There is a 50% chance that they have the HLA-B27 gene as well. So we will probably need several specialists in DC that can sort this all out. Trevor is felling better so hopefully they can blast the other stones before they start to pass and cause too much pain. He is sched. for next Wed.

Well I better go Christmas and Birthday stuff awaits. So much fun!!!!

Trevor's Surgery

Trevor had surgery today to remove a couple kidney stones that just weren't passing. They were able to get 4 stones, two were blasted very nicely, however, the other two had to be removed by the MD. Since there were some concerns with bleeding, they were not able to remove the two larger stones that are still in his kidney. Instead, they want him to come back in for a second procedure in a couple of weeks to remove them. He is still in a lot of pain from the stent they had to leave in. Hopefully he will be feeling better soon! Also, just wanted to wish everyone a very happy and safe thanksgiving.

Melting Popsicle and So Much More

This week has turned out very eventful. Sometimes I wonder if we will ever get back to "normal". Sunday, as we were leaving for church, we got the call that my Grandfather Taggart was very sick. We were able to be with him during his last couple of hours. He was a very strong man who loved his family and country. He will be missed.

On Monday Davin decided to "help" by putting the Popsicles back in the fridge instead of the freezer. My coveted all-fruit Popsicles at that. Also on Monday, Dr. Krantser's, who is the leading expert on TRAPS in the world, assistant called me about getting the boys into the NIH for research. So needless to say, more paperwork, Md's and research had to be done. In fact I didn't even notice the melting Popsicles in my perfectly groomed fridge until the sticky damage was done. YUMM. Tues I was back to the MD's and rushing to get pictures and paperwork in the mail. Wed we were at Primary Children's Hospital to meet with Gastroenterology. We did not get as many answers as we would have liked, just more blood work and "wait and see" answers. Basically I was told that potty training Davin should be one of the last things on my list since we don't know how to treat his condition. In the hospital Ryan had an accident so we rushed home instead of going to the Zoo. On the way home, you guessed it, Ryan threw-up. After cleaning him, I put him down for a nap, only to have him wake-up one hour later screaming. For the next two hours all I did was hold him with his feet to his chest. As he cried. Since we just got back from Gastroenterology, I didn't know who to call. An hour later he went to the bathroom and I noticed blood. After that he was fine. Let's just say, I was glad to go to Enrichment Night. Thanks Elodie for taking me!

Finally after I came home from Enrichment, Trevor asked what I needed. I said, "Sleep and some time with no medical issues". Well, true to his word, he gave me 7 hours before waking me up in incredible pain. When Trevor asked me to take him to the ER, I knew he was not kidding. So come to find out he has kidney stones. Since the biggest was 5mm they gave him a lot of pain meds and he is trying to work through the problem now. Luckily, Ryan seems to be feeling better today- just moody! So in the end, I guess the coveted-melting-Popsicles were not that big of a deal, however, one sounds good right about now!

24 Month and Counting

So today was the day I put Davin's pants on the last notch. This is a good thing because even though he is small, he still has height and 18 month pants are not cutting it anymore. Now he can hold up most 24 month pants with diapers on. This is a huge step for him. He can wear 3T tops because it doesn't matter how big around those are, he just needs height. I don't know what we are going to do when he is potty trained. Next week he is back at Primary children's to see Gastroenterology , so I'm hoping that they will have some practical answers. I think he is hypotonic as well as having TRAPS. Since he will be 4 next month and still showing issues we are hoping to get him the help he needs.

As far as the shots are going, it couldn't be better. I'm getting used to mixing the solutions, drawing, prepping and injecting my kids. The needles are small so it is not as bad as it could be. I honestly don't know how parents of diabetic kids do it day in and day out. 4 a week is enough for me.

I'm doing well, still VERY tired all the time. Luckily the pain is not bad, in part because I'm still quite numb from my surgery in May and I kind of know what to expect. My MD's said that they could not find any ovarian cancer so I am very excited. The survival rate of stage 3 ovarian cancer is 25% and I had a hard time wrapping my mind around that. The ovary was the size of a grapefruit and severely infected with some other concerns so they took it. They are 100% confident that they got all the uterine cancer and since the margins were clean I don't have to worry about it anymore. I also have not lost as much hair as I thought I would. Honestly I don't know how people do this.

Finally, to my surprise --- or maybe it was wishful thinking --- but Tyler and I do not have TRAPS. I was hoping it would explain the uterine cancer cells for me and Tyler's Autism, but I guess we will just keep those things separate. So our assumption is that Trevor has it, and I thought he was the healthy one! There has just been too many health issues in the last 4 years. I really feel like I should be getting a medical diploma right about now or at least some deep discounts!

So Thankful

I'm grateful for such great family and friends that have been so wonderful! I'm doing better, my fever is gone and all the blood work is looking better. The Md's still are not sure what happened but we are grateful that they ruled out complications from the surgery. Another day in the hospital was not fun and Tyler asked me if I can postpone any more surgeries until after the holidays (poor kids), but when I started spiking fevers over 104 a week after surgery, the doctors didn't want to take any chances. I have a couple more weeks until I'm back in full force (heaven help us) so I'm looking forward to a great holiday season. Again, I can't thank people enough. Beacuse of medications, I have had a really hard time staying awake and lifting my kids so I am grateful for every act of kindness. Thank You!!!