Ella is fourteen months old!! Wow how time has flown. It is amazing how much she has accomplished during this time. Her newest milestone is that she has finally figured out how to go from laying down to sitting up on her own. She is really starting to pull up on things to her knees but it is hard in our house because there really isn’t much at her level for her to pull up on. Our couch has cushions that are too thick for her to grab on to so her favorite thing to use is one of us when we are laying on the floor. She still refuses to get on all fours and therefore isn’t crawling yet. It is frustrating because she has all of the components but just doesn’t want to put them all together yet. However, I am thoroughly appreciating every moment that I have before crawling because then I know my life will drastically change. She continues to be amazingly healthy. And believe me that I thank God for this every day after knowing what some of you with children with Ds have gone. I know how fortunate I have been!! With the exception of two minor colds to date, she has not had a single health problem that we have had to go in for. Of course this is not counting the biggie…..the most likely onset of leukemia….sometime in her future. We go back in another week and a half for an updated blood draw to see if any numbers have changed but for now, she remains healthy. She also continues to be one of the happiest babies I know. I am telling you, the kid smiles every time someone looks at her. Actually, she smiles sometimes just because she finds herself funny. There are so many things that we all have taken for granted with our other children that we appreciate so much more with our precious Ds children. I really wanted to thank Zoey’s mom, Heather, for pointing out something to me that I didn’t even appreciate enough with Ella. Her smile!!! Heather was telling me how when Zoey had her infantile spasms, they lost Zoey’s smile and how devastating that was. As we all know, Zoey has that beautiful smile back but her comment really made me realize how much we need to appreciate EVERYTHING our kids do.
Normally, I would have posted pics of Ella from birth to one year when she turned one year but since I wasn’t blogging then, I decided to post them now. I have taken a picture on our couch every month. What a difference a year makes!!
Birth (actually 6 days later
One Month Old
Two Months Old
Three Months Old
Thursday, May 28, 2009
This past Tuesday, Ella and I were lucky enough to get to go visit Zoey and her mom, Heather, at CHLA. We even got to meet daddy for a few minutes. We had such a great time and as you have heard before from others, Heather makes you instantly feel like you have known her forever and little Miss Zoey wins you over immediately. It was so much fun to watch Ella and Zoey interact with each other. They are very similar in size and development so they really were intrigued with each other. Zoey thoroughly enjoyed pulling Ella’s hair which Heather hated but I thought was pretty funny because Ella is constantly pulling all of our hair…and it hurts!! They even tried to roll a ball back and forth to each other. Zoey gave us continuous and beautiful smiles. I didn’t want to leave and stayed so long that Ella was completely DONE and ready for a nap. She fell asleep before I even got to the parking lot and she NEVER does that. Heather gave Ella her very own pair of Baby Legs which I am so excited about. We got some cute pics of the girls wearing them. I truly look forward to the next time that we will be able to see them!!!
Girls with their Baby Legs
Aren't those Baby Legs so cute!!!
Girls with their Baby Legs
Aren't those Baby Legs so cute!!!
Monday, May 25, 2009
Last night as I was saying my bedtime prayers, as I always do, I prayed for family and friends in need and then moved on to my family. As usual, I prayed for Ella’s health and thanked God for her as I do every night. But tonight was different, I felt an overwhelming sensation of just how thankful I am for her. I mean I realized just how strong my love is for her and how I wouldn’t EVER change a thing about her. When we found out that she would be born with Ds, we heard all of the clichés about what a blessing she would be to our family and what joy she would bring etc. etc. But you know what, those aren’t clichés. It is the honest truth!! I AM SO THANKFUL FOR YOU SWEET ELLA!!! Thank you God for putting her in our lives…..as usual, You know what is right!!!
Thursday, May 21, 2009
Yesterday, we had the privilege of meeting up with a family that we met through the wonderful blog world. Little Preslie and her family were visiting CA and we saw them yesterday at Sea World. We had so much fun with them.....what a wonderful family!!! Preslie's mom and I couldn't get over how much the girls looked alike despite their 5 month difference in age. I look forward to seeing them again and hope to meet many more families through our great Ds network.
Mom's and their girls!!!
Wednesday, May 20, 2009
Tuesday, May 19, 2009
When I was pregnant with Ella, I did all of the testing they recommend, including the AFP (or triple screen). The results came back that I had a 1 in 12 chance of her having Down Syndrome. Now, I know that these odds were more in our favor than against us but I think that throughout this pregnancy, I kind of just had a nagging feeling that something may not be just right. So we decided to go in for the level II ultrasound and see what that showed before we would make a decision on the amnio. During the US, they did see a few markers for Ds such as a missing nasal bone, sandal toes, and something small in the heart. So right then and there we decided to do the amnio. I think, for me, that those next few days while we waited for results were the hardest. I think I already knew….but I still held on to a glimmer of hope. I had to go into my OB’s office a few days later to get a shot and he came in and told me that, yes, she had Down Syndrome. I just looked at him and said “I knew it”. Then I had to go and call my husband and tell him the news. I think that was harder than getting the results!! So, the next few days we were devastated, sad, grieving and even touching on that horrible thought of terminating the pregnancy. Luckily a friend put me in touch with someone with a child with Ds and she was able to tell me that life wouldn’t end as we knew it, that this child would be more amazing than we could ever imagine and that we were Blessed!! For me, that was all I needed to hear. Also, as we were waiting for our test results, my cousin came across a blog about a little girl with Ds who had the same name as we were going to name our little girl….Ella Grace…. this blog had pictures of the most beautiful little girl who just stole my heart. http://theamazingellagrace.blogspot.com/ During those dark days after getting our results, I looked at this blog over and over again and before I knew it, I started to get excited again about my little girl. For me, that was it….I moved forward and never looked back. It took my husband a little bit longer (actually until her birth) to really be excited about her again. I think because as moms, we are attached to them so much more because they are in us. So the rest of the pregnancy was uneventful other than switching to a high risk OB. Ella decided to arrive 5 ½ weeks early but still weighed 6 lbs 9oz and had no breathing problems or anything. She initially was in the regular newborn nursery but then due to low blood sugar, they decided to move her to the NICU. As anyone who has been in there can attest, once in there, it takes forever to get them out. She stayed in the NICU for 9 days. Her biggest concern was that she was born with Transient Myeloproliferative Disorder which is basically a high white blood count. This disorder puts her at an even higher risk of getting leukemia than other children with Ds. So, since her birth, they have monitored her blood counts. A couple of months ago (March 2009), some of her numbers dropped, specifically her platelet count. When it stayed down for a few visits in a row, they decided to do a bone marrow biopsy. Although the bone marrow was still clear of any leukemia cells, the chromosomal tests showed that the cells are there and that most likely she will develop leukemia in the near future. They were originally talking about starting chemo right away but her blood counts look good and they have decided to hold off. So for now, we wait and see what is to come. But so far....every minute of this journey has been an absolute joy. Everything people said we would feel about our baby is 100% correct and more. We could not love her more!!!