I have copied and pasted an email I had sent via the RTS List Serve - to all my RTS family. I know a few of you have opted out of the list serve (to keep your sanity) so I thought I would share on here as well. Also, to thank my family and friends who have been so supportive of us this past year. Thank you all. XOXO
I found myself thinking a lot today and wanted to drop you all a note. I have spent this day reflecting on this past year, and how my world has been completely thrown for a loop. How the lives of my family has been completely changed. I never thought this would be me. I know none of us ever thought we would be in the position that God has put us in. The parent of a differently-abled child. Before Brooklynn was born, I had all intentions on returning to my full time job as the manager of a retail store (Justice - formally Limited Too for those who have girls and know this store). :-) We had her on the waiting list to get into a local daycare (the same one my son went too...yep..there's a waiting list!). We had our lives all planned out. But when Brooklynn came, everything changed. Needless to say, I no longer work due to our hectic schedules and she stays home with me. I was induced a week and a half before my due date because her weight had dropped to the 7th percentile and we werent sure what was wrong. I kind of had an inkling there may be a problem. Then she came, and she stopped breathing. The respiratory team rushed in and she was taken to the NICU and put under an oxygen tent. As soon as I could, I went to visit her in the NICU. I thought a day or two and she'd be home. Then on the 2nd day, they had scheduled her for ultrasounds, a swallow study, and the cardiologist came in to see her. As my husband and I sat there next to her bed, the Neonatologist came to talk to us. In the middle of the conversation, very non-chalant, he mentioned she might have Rubinstein-Taybi
Syndrome. Before the conversation was even finished, my husband had found the RTS website on his blackberry and had shown me the pictures of the children. After reading a little about this and seeing the photos, we KNEW she had RTS. Brooklynn spent 17 days in the NICU before she was sent home - and referred to quite a few doctors post discharge. During those 17 days, there were only about 2-4 hours a day that either my husband or I was not by her bedside. I left a CD player next to her bed with Jewels lullaby's playing 24 hours a day. I cried and cried and cried those 2 weeks. Not because she had RTS, but because I had to continuosly leave the hospital - without my baby. She came home the day after Valentines Day. (The day before Vday, my dog that I have had since I was 13 passed away - a nightmare of a 2 weeks.) Of course - we celebrated Valentines Day with her. We brought her balloons and a bear and dressed her in a Valentines Day outfit. I even decorated her bassinet in the NICU with sticky hearts and the nurses had made her bows. 2 weeks after we were home, we had already been to see her GI doctor, and we were at the childrens hospital having another swallow study and UGI. During the UGI, they discovered malrotation and she was immediately admitted and had surgery just a few short hours later. Needless to say, I was a mess! And thus began our many hospital stays throughout the year. During that surgery, she had a LADD procedure to correct the malrotation, an appendectomy, and her Gtube placed. She was inpatient for 18 days. She was home for 4 weeks before having another emergency admission for choking (aspiration) and had another surgery - a nissen fundo. She again was inpatient for 18 days. She's had a couple more surgeries (left knee reconstruction, laminectomy for a tethered spinal cord, an a steriod injection in her Gtube site for granulation tissue). In between stays, we have had many many many ER visits. She currently see's 11 doctors and 3 therapists. We usually have 1-3 doctors visits a week and she currently goes to PT 2x a week and feeding therapy once a week. And I cannot tell you the amount of progress we have seen! She has finally passed a swallow study for trial portions of honey consistency/pureed foods. And she has been ok'd by her orthopaedic surgeon to begin gait training in therapy as she is finally able to bear weight on her left leg after surgery. She is almost standing on her own and they hope she'll be walking by 18 months. Now having said all of this, my reason for writing this is because after everything we've been through this year, I wouldn't change a thing! Of course I wished she didn't have to deal with the things she has to deal with. I wish I could make all this easier for her and my family - especially my son who has taken this so well and adores his sister, but has had to be without "mom" during Brooklynns hospital stays. I wished she didnt have to suffer the pain that she sometimes endures. But she is perfect. Absolutely perfect. There is not a day that goes by that she doesnt put a smile on my face, or make me laugh because of the silly things she does. She has been the most amazing gift and the perfect addition to our little family. My son adores her. And she is the biggest daddy's girl! Every time I am out with her, I am stopped. She put's a smile on the faces of everyone she meets. She not only brightens up our home, but she makes the world a brighter place to live. Now to all of you....I recently watched the RTS video that just came out to purchase. One thing stood out to me. One of the mothers stated that "if her child had to have a syndrome, she was glad it was RTS." SO AM I!!! If Brooklynn has to have a syndrome, I am grateful she has RTS. You all have been the greatest support for me this first year! I feel like God has blessed me with a second family. Until Brooklynn came, I never realized how many truly amazing people there were in this world. Thank you all for everything. There are 2 other RTS families besides mine that live here (within 5 minutes of me) who have been a great support as well. And there are I believe 6 families that are within an hour of me. I havent met them all yet, but hope to soon. We were unable to attend this past conference due to Brooklynn's surgeries, but I hope to meet all of you one day. What a journey this has been. Brooklynn has taught me more about life than I could ever teach her. They say as parents we try to teach our children all about life, but our children teach us what life is all about. Thank you all again for all the support and encouragement this year. I am sorry this is so long, but I have alot to write, as I have a lot to be grateful for this year. We've made it through year 1!!! A happy 1st birthday to my sweet sweet girl tomorrow! (And then a happy 9th birthday to my son on
Saturday!)
