Eli accomplished two major milestones over the last couple of weeks. First of all, he mastered the unsupported sit.
He has thoroughly enjoyed seeing the world from a whole new point of view.
Then, two days ago, while his new speech therapist was here, he crawled! He went commando style (on his belly using his legs to inch forward) after a piece of paper of all things. Who knew that’s what it would take! His determination was fierce. I was in awe. Next we will work on hands and knees crawling but I’m in no hurry. I appreciate each milestone he hits, when he hits it.
I was chatting with a mom who is new to this journey (she found out her son had Down syndrome at birth six weeks ago). I told her that one of the wonderful things about Down syndrome is that our babies stay babies just a little bit longer. I appreciate every little thing Eli does instead of just the major milestones. The other day he mimicked his daddy by raising his eyebrows back at him. Our claps and cheers would’ve suggested he did something much more impressive – but to us, it was the most amazing feat ever. We celebrate everything – so much so Cody now claps and cheers each time Eli takes a bite of food or picks up a toy. I guess mommy and daddy aren’t the only ones ridiculously proud of the youngest member of our family! Have I mentioned what an awesome big brother Cody has become?!
I hesitate to “brag” about some of Eli’s accomplishments out of fear of hurting another parent’s feelings. It’s hard when you hear about a child accomplishing something your child has yet to do. You start to feel a tad jealous or inadequate as a parent or fearful you aren’t doing enough to help your child succeed. We’ve all been there. We’ve all thought it. None of it is true but they are rough feelings to process. Being the parent to a child with special needs takes extra time and energy. I never thought I’d have to spend 2+ hours a week with a therapist teaching my child how to sit, crawl, speak, and eat. I was enough for Cody, but Eli requires more focus. That can be daunting at times. It has been overwhelming some days. But, the look of satisfaction on Eli’s face, and the pride I felt swell up in my heart, makes every single second worth it.
I continue to be inspired, in awe, and so very proud of both of my sons. We are truly blessed.
Eli had his Early Intervention evaluation on Monday. The therapist agreed that he is very strong and scores right along with his typical peers. In fact, if he didn’t have Down syndrome he wouldn’t have qualified for services since right now he shows no delays. But, Down syndrome is an automatic qualifier. Babies with DS tend to start out on an even playing field with typical babies. Then, with some skills, they start to fall behind. The goal of Early Intervention is to try and keep them even, or at least close, to other children. Right now, there’s not much to look at besides the basic motor skills of a 6 week old – Can he grasp a finger? Hold up his head? Follow objects with his eyes? Yes, yes, and yes. And guess what else Eli can do? He can smile!!! A few days ago he looked right into his Daddy’s eyes and gave him the biggest smile. It was heartwarming to witness. Those two have a very special bond.
I really liked our physical therapist. I was so relieved. I’ve heard too many horror stories of bad therapists. Right away I knew we were on the same page when one of the first things she said to me was, “Eli is your child, he is NOT a diagnosis”. Thankfully she sees our baby as a person. She understands that he is not defined by Down syndrome. He will do everything at his own pace and she is excited to help us get there. At our next appointment we’ll set goals for Eli’s progress. What do I want to see him do in 6 months? I used to write goals all the time in my past life as a Director of Sales. We called them SMART goals. They had to be Specific, Measurable, Achievable, Realistic, and Trackable. When she told me to write down goals I instantly thought back to what I was taught in sales. Could I give my son realistic goals? Would they be achievable? I didn’t want to set him, or myself, up for failure. In six months I want to look back at our goals and be able to check some things off. I asked the therapist how I could make sure Eli met the goals we set for him. She answered that he’ll do things at his own pace. We will do specific exercises that will help him but we can’t guarantee that he’ll master the skill in time to ‘check it off the list’. I’ll still write SMART goals for him – we will celebrate each ‘check mark’ and focus on what still needs to be done. Each milestone will be a victory. He may have to work harder and longer to reach that milestone than typical children. That will give us even more reason to CELEBRATE! Our son is teaching us to appreciate and recognize the little things in life. Where we once celebrated and cheered when Cody walked for the first time, with Eli we’ll celebrate and cheer when he sits up or holds a rattle. Maybe we should’ve been celebrating those achievements with Cody as well. But, that seems like a lifetime ago. Back when we saw life differently. Now, we are constantly reminded to slow down and take life as it’s handed to us. That old saying, stop and smell the roses has never made more sense.
Now, we’re headed out to smell some pine as we go in search of the Harrington Christmas tree! A little later than usual but with a wild 2 year old in the house, the less time we have the tree up and decorated the less time we give him to destroy it. Ahhh – ‘Tis the season!!!
Sorry that I was in such a raw state emotionally last time I posted. This is a hard road to travel – having a newborn who is “sick”, constantly waiting for the other shoe (in our case, shoes!) to drop. When I started this blog I committed to be open and honest with my emotions – good and bad. Life isn’t always rainbows and unicorns and I can’t pretend that I’m always perfectly ok with what has been blessed upon us. Please understand that I passionately love my children and when I speak of life being unfair it is not me I am sad for – it is them. I can handle anything. As a mother I just want to shield them from any unhappiness and pain that I can.
Eli did not respond to the initial Lasix dose of 0.2cc’s twice a day so now it’s been upped to 0.4cc’s twice a day. I really pray this helps him. He’s still eating like a champ but his breathing is labored. That is really the only sign that he’s in heart failure currently. Hopefully this increased dosage will help and it will buy us more time. We really want him to be bigger before handing him over for surgery. He doesn’t necessarily need to be but I’d definitely feel a little better if he was. So, our job continues to be to fatten our little guy up! Cody happily participated in feeding him last night.
We received a referral from Eli’s pediatrician for an ENT (Ear, Nose, Throat dr.) so we’re waiting for them to call us back to schedule an appointment. I’d really like him to be seen by them before having his follow up hearing test. He’s a very snuffly boy so I’m convinced that part of his hearing issue could be contributed to his stuffiness. They told us in the NICU to not suction his nose unless absolutely necessary because it could cause damage to his very small nasal passage and nostrils. The night he failed his hearing test he sneezed and we had to suction him. He seemed to be much more aware and alert after that! Sounds far fetched but both Chuck and I noticed it. He was definitely not our same “Snuffleupagus” after getting some of that yuckiness out, that’s for sure! He seemed to actually feel better. Today, unfortunately, the stuffiness is back.
We also have an appointment scheduled for his Early Intervention evaluation. Early Intervention (EI) is a program provided by each state in the country. They offer therapy services (physical therapy, occupational therapy, and speech therapy) based on the needs of the individual child. This service is available to any child that they evaluate and deem that it is necessary. Usually, Down syndrome is an automatic “in”. Once they evaluate Eli they’ll decide what services he needs and how often. Then the therapists will come to our house for each appointment. It was very important to Chuck and I to find an in home therapy program as we feel it will be more beneficial for Eli and our family to use the tools we already have in our home. Plus, they can include Cody in the therapy process. Who better to teach Eli than his proud big brother?
Chuck and I were just talking about the fact that our 3 week old baby (today – Happy Birthday Eli!) has more doctors in his short little life than the other three of us have combined. Crazy! Our job as his parents is to make sure he is always in the care of the best doctors. That takes a lot of work and research but our boy is most definitely worth it! I’ve heard that the first year with a child born with Down syndrome is the hardest as far as doctor visits, specialists check ups, etc. I’d say so far this is very true. In his short time at home (2 weeks) we’ve already been to 7(!!!) doctor appointments. Wow. And we’re adding in two more specialists. At least we’ve got lots of eyes keeping watch over our boy! We just want him to have the very best start at life. We want him to have the best so he can be the best.