Hi guys!! I am writing this update from Phoenix at my home computer....and it feels very strange. I am home for the weekend with my hubby for my brother's wedding!! Congratulations Mark and Renee!! They will be getting married Saturday morning, and we are all very excited for them. It will be a fun time of celebrating and seeing family and friends. We are very sad that Dylan will not be a part of the celebration, but he will have everyone there cheering him on! Renee, the gorgeous bride, will be wearing a Dylan bracelet on her ankle and all of the groomsmen will be sporting the stylish orange accessory under their jackets!! So, in a way, Dylan WILL be there. By the way, if you have not gotten a cool Dylan bracelet and would like to have one, just send us self-addressed, stamped envelope to the address in the right hand column! We would love to send you one!
This weekend Dylan will be spending some quality time with his Auntie Karyna. She has been such a blessing and a lifesaver! She hates to be the center of attention and will probably not like me saying all of this about her--but oh well!! She deserves the praise! She has been switching off nights with me, so that we both get a good nights sleep every other night. This is not something that I have asked her to do, but something she insists on! She is amazing and we are beyond thankful for her! I LOVE YOU KARYNA!!
Dylan is continuing to increase his WBC every day!! Yesterday he was at 2100 WBC, and today--2700!! Way to go Dylan! He is still on the oxygen, and the level is at the lowest possible--0.1--but he still wants to hang on to that extra help. He has been less congested lately and the Dr. feels that once that goes away, then he will be fine. We attempted to feed him yesterday. He has been on TPN for about 3 weeks, and has not had any bottles. We tried feeding him a little bit of water first, to see how he would react, and he did not like it too well. Today I fed him some soy formula mixed with rice cereal and he seemed to enjoy it. He drank about an ounce, and then waited for me to leave until he threw it up on Auntie Karyna....at least he tried :) We will keep on trying! He will eventually want to eat again. Some kids take as long as 6 months to want to eat again and to get back to normal eating habits. The Dr. said that all of the kids are different and babies always seem to do better with eating. Please pray that Dylan's appetite comes back quickly so he can get off of the TPN.
We are still scheduled to go home early next week--YAYAYAYAY!! We have found a place to live that is close to the hospital, but still has a "normal" feel to it! We are excited to get out of the hospital, but apprehensive at the same time. Although we will be leaving, we will still be coming to the hospital daily for clinic visits that can last anywhere between 4-8 hours!! FUN FUN!! This is where he will get his blood drawn and get any transfusions or medicines that are needed. 90% of his medicines are given by IV, so I will be in charge of being nurse mommy again, and will have to administer the meds at night. SCARRRRYYYYY!! Although I feel that I am competent enough to handle this task, it is always frightening knowing that I am injecting drugs STRAIGHT into his bloodstream!! May God protect me from ever making a mistake! The nurses have been showing me how to extract meds from the glass medicine vials with a needle and syringe--it's a lot of fun! BUT I am sure that I will end up poking myself somehow...hopefully not. We are hoping to be able to get D on a schedule along with ourselves. It will be nice to be able to cook dinner once again and go for a walk outside. These things may sound so simple, but they are pleasures that I have not had the past 3, almost 4 months!!
Since I will be here for the weekend, I will not be updating the blog until Sunday night :) So don't worry if there are not any postings until then...if something is wrong....we will post it! In this case, no news will be good news!!
Thank you all for being so supportive!! It's amazing to me how many people read and follow Dylan's blog and listen to me babbling on! Dylan is loved!!