More Doctors Appointments Anyone?

Baby Boy just turned SEVEN months old last week! We have no idea where the time has gone! He's getting so BIG and doing incredibly well so here's a medical update...

 

Since he came to our home when he was 2 weeks old exactly, we have taken him to 62 doctors appointments, therapy appointments, three surgeries,  and glasses and contacts fittings. If you're in need of a specialist for a tiny tot, I probably have seen a good one and could give you a little guidance! We are definitely feeling blessed to be so close to Primary Children's Medical Center both downtown in Riverton and at the Rehab Center in Taylorsville. Its HUGE to be able to take baby boy to professionals who are TOP in their fields; people travel from all over the nation to see some of the doctors that we see who are basically in our backyard.

 

As of right now, he's really doing so well. On April 2nd, he had surgery to have ear tubes placed. He has not had any ear infections which makes it seem weird that he needed tubes, but he had not passed any hearing tests in his lifetime and some of that was being attributed to fluid in his ears that could be remedied with ear tubes. He also underwent a ABR hearing test which measures how your brain picks up and receives auditory messages at different wave lengths and volumes and was much more comprehensive than the hearing tests he had been failing. To our delight, he passed the ABR with flying colors!! We were very concerned that he might have lifelong hearing loss as many cuties with Down Syndrome do, but turns out, he's just been ignoring us!

 (I can't say I blame him. You know what they say, two is company, three is a crowd and our family is a circus!) So we're just recovering from tubes surgery (one of his ears is super yucky infected, it looks like a runny nose coming out of his ear, but its on the mend) and rejoicing in his hearing ability.

A few days after surgery, we got a call that his contacts were ready to be picked up. He got glasses when he was about 3 months old after having cataract removal surgery.

 (He was born with gestational cataracts, something I had never heard before but a child is at risk for it if: there is a family history of it, the mother uses cocaine during pregnancy (check) and if the child has down syndrome (check). I guess it would've been more surprising if he had been cataract free.)

The glasses got here months after he was sized for them and then had to be fitted in office which took over a month. By the time he received his glasses, he was only able to wear them for about two weeks before they caused a lot of pain to his head and eyes from being too small. So, basically baby boy has been nearly blind his entire life, getting contacts was something we were definitely looking forward to. When the big day came, Tanner and I took the gang to go pick them up, they wanted both of us to be there to learn how to care for and use the contacts. They are very similar to traditional hard contacts so they aren't exactly user friendly. We practiced taking them in and out of his eyes a few times and by the end we were sweaty (all three of us), crying (all three of us! jk!) and needing a diaper change (only one of us thank goodness! Luckily we haven't lost it that bad yet!) But we felt like we understood how to take care of them and that he would be good to go going forward.....

 

Let's see... The first morning I put them in by myself, he freaked out, rolled away from me, yelled at me, hit my hands away (I don't like this side of him! Where's my sweet baby boy?!) and after what felt like a lifetime, finally got the darn things in there. (The SECOND I'm done he is totally fine and back to normal, he just hates his face being touched, washing his face is equally heinous) Then I brought him to my room to feed him and left him laying on a blanket for two minutes while I went to help Emerson with something and when I came back, one of the contacts were missing!! I tore the house apart on hands and knees and quarantined the other kids to one corner where we hadn't been. I looked in his eye to see if it had moved, didn't find it, and looked through his clothes and even in his diaper (Emerson lost an earring in there once so it didn't seem to far fetched) Still nothing. After lots of prayers, and wracking my brain, I decided to check his eye again and it was tucked up super high on his eye ball. I gently moved it down to is pupil like they had taught us and was glad the drama was over....until it was time to take them out and the craziness began again. He really acts like you're committing a hate crime against him if you look like you might touch his eye now. Needless to say, I save my showers for after his contacts are in/out because it's a workout! Lucky for us, once they're in or out, he is very happy and loves to take in all of the scenery. It's so wonderful to watch him follow things and see his eyes focus better. He use to have his eyes twitch and search for things at times like many people with significant vision loss and he's already improving after only a couple of days. Hopefully when he is older he will be able to have lens replacement surgery and we could put all of these glasses and contacts behind us! We're thankful for what we have for now....and even happier that he's allowed to wear them during his naptime! Can you imagine?!

 

Therapy:

Baby Boy is no stranger to therapy for a seven month old... he has been in feeding, physical and vision (PIP) therapy twice monthly since he was about 6 weeks old.

(This is not uncommon for children with Down Syndrome) 

Feeding therapy went super well, especially when you consider that he was on an NG feeding tube for the full months of November and December. Apparently, it is almost unheard of that an infant on a feeding tube will end up drinking bottles and eating as early as Baby Boy has. In fact, he started eating solid food at 4 1/2 months which is much younger than most infants' parents choose to start solids. Baby Boy is still on formula that has to be thickened so that he swallows it correctly, but other than that, feeding is pretty average.

...except that super sized tongue of his..... 

Feeding baby boy is like a war zone. I have to lay out blankets around him and wear clothes I don't mind having splattered on and get in a zen mode before feeding him. He is HANDS DOWN the hardest baby I have ever fed in my natural life. He has a tongue the length of a giraffe's and you NEVER see it, except for when he's trying to eat! Then all of the sudden, he's poking it out everywhere, licking everything and spitting like he's in a contest against a camel. By some miracle, we end up getting him to swallow everything, but it isn't without a lot of sweat and tears. Tanner and I often play rock, paper, scissors to determine who gets to enjoy the experience that day. (I won't tell you if winner or looser 'gets' to feed him to protect his feelings someday...and to keep up appearances as a parent! Ha!) Basically, he's seriously a joy to take care of, he's full of cuteness, joy and life but if I never had to feed the little fella sweet potatoes again, I think I'd pull through. A feeding (and vacuuming while we're at it) nanny would be AWESOME! But every time he eats, he gets better and I don't think it'll be long until he's not much different from any other baby. We're training that little tongue and are determined to win the war on lizard tongues everywhere. He's at least doing well enough that he no longer goes to feeding therapy...for now...

 

Physical Therapy is by far where baby boy shines! He is ahead of some typically developing babies his age and that is astounding! He can jump, roll, scoot and is working on sitting, standing and crawling. It is so much fun, like with any kiddo kid, to watch him pick new things up every week. I think that now his vision is improved, he will continue to improve because he will now be able to see the toys we put out for him and have something to try to reach for. Most kiddos with Down Syndrome are considered 'floppy' when you talk about their muscle tone, both inside (which is why he had to have surgery on his trachea) and outside (which is why many of them struggle with physical development.) This is why his progress has been so huge and why ever professional who sees him is thrilled and a little shocked to hear how well he is doing and how strong he is! He barely needs assistance to stand! It is fantastic! It hasn't come without hard work, but every minute of therapy and all the times he yelled at us saying he was done with tummy time has been totally worth it! Now he LOVES tummy time and it's almost impossible to keep him on his back!

 (Especially at contact lens times)

 

Vision Therapy has mostly been trying to teach him to engage in reading books, picking up items then bringing them to midline (both hands together at the middle of the chest) and then up to his mouth. He has been making progress every time he sees the therapist, but hasn't achieved all of those goals yet. Now with the contacts, it appears it won't be long until he could be done with vision therapy as his eyes take over and they naturally start doing their job.

 

All in all, he's doing fantastic in every way! When I look back on the road that got us here, it was very difficult at times and there were lots of days I questioned whether or not we were going to survive. I don't doubt that as life progresses, those days will appear again, but it is great to be on the mend and have things headed in the right direction. Regardless of the adventures coming our way in the world of Down Syndrome and the stuff that comes along with it, we will always be able to look back on this part of his life. We will be able to remember that all 'downs' in life come with a way to soon be on the up and up if you work hard enough and keep searching for the solution!

(Besides, there's nothing sweeter and cuter than a T21 (Down Syndrome) smile...and they always know the best time to whip one out!)

 

Thanks baby boy for teaching me how to be a better momma...and just how menacing pureed sweet potatoes can be!

Rights Relinquished

Every court date seems to hold more weight than the last.

Last week was one of the most solemn court dates so far. Bitter Sweet doesn't begin to describe it.

 

I walked into the court house with baby boy in arm and headed toward our courtroom, I was trying to be prepared for anything. What if mom didn't come, changed her mind or was under the influence? I didn't know what to expect and I didn't know if I was more nervous for me or for mom. When I reached the courtroom doors I found the caseworker and mom sitting outside waiting for our scheduled time slot. Mom seemed to be in fairly good spirits and seeing baby boy certainly lifted them. I sat on a bench by the caseworker and mom sat on another holding and snapping pictures of baby boy. It had been three weeks since she had last seen him and he has recently been starting to become more aware of stranger danger. I definitely had a prayer in my heart that he would remember her. Luckily, he must have because he cuddled into her, cooed at her voice and gave her lots of big cute smiles. (I REALLY wish I could show you a picture of him! He's DARLING so you'd better understand how sweet their exchange really was.) It was interesting to me to watch her with him. She cuddled him in the same positions I love to cuddle him (and he likes things other babies don't usually so it was very unique), she said some of the same things to him that I always say. He looked at her like he looks at me, she kissed him and he kissed back, like he and I do everyday. In those moments I realized how the same mom and I really are. (In fact, the first day I met her, and often when we would be seen together by people who did not know our situation, we would be asked if we were sisters.) I realized how we are both baby boy's mothers and how we both love him with all of our hearts, how we both want the best for him.  Before that day, I had chosen to focus on our differences. How she was raised v. how I was, or how I tried to sacrifice to make sure baby boy's needs were always met v. how it appeared to me that she didn't seem to care. But in this moment, I saw someone who had courage beyond my own. A woman who was willing to give up what she wanted for what would ultimately be best for her baby, even though it pained her and would continue to pain her the rest of her life. My happiest days, his birthday, Christmas, Easter, etc. will forever be days that are hard for her, where a piece of her is missing. Any woman who can know that, and still willingly have the strength to see the bigger picture for her child is one who should be honored and celebrated, regardless of the past that got her there. I thought I was teaching birth mom this whole time, that I was being an example of what a mom is....birth mom taught me far more than I could ever have shown her. I hope that I can always remember her courage and example of what it truly means to give of yourself to help your children be successful. I also now realized the weight of the promise Tanner and I have made to her to care for her son for the rest of our lives. She has trusted us with him, and we have a heavy duty to uphold.

 

 Court was running an hour late that day so it was nice that mom and baby had a lot of time together and I had a lot of idol chit chat with the caseworker.

(Fun fact, on the day of the winter storm, court was running early, on the day the weather and traffic was perfect we were an hour behind!)

 

Like last time, before court began, Mom took a moment to visit with her attorney and then we entered the courtroom. Once introductions were made, her attorney expressed that it was still mom's desire to relinquish her rights that day. She was read a list of questions each to ensure she understood the gravity of her choice and to make a record in the court that it was her decision. With every question she was asked and answered, she was closer and closer to the end of her time as baby boy's mom and I was getting closer to becoming his mom forever. The solemnness of that situation was not lost on me or anyone else in the room. There really is nothing like hearing a mother say more than once that she agreed to giving up her rights and responsibility as a parent to a child who she truly loved. When the questions were complete, she was handed the form and with one signature, relinquished her rights as baby boy's parent. For the first time, I saw an emotion from mom other than anger. Her shoulders shrugged as she sobbed, I could almost see and feel her heart breaking and only begin to imagine the pain she must be feeling... and I missed most of what the judge said after that.

 

When court was dismissed, mom stood and hurried out the door, down the hallway and out of the courthouse. As I spoke with the caseworker afterwards, she explained that was likely the last time I or baby boy would ever see mom. She did not request a final visit, the judge did not order one, she did not request our contact information or any future updates or contact on baby boy's behalf. I was shocked. I have spoken to other adoptive foster parents who all had final visits with their kiddos and birth moms and I had come to believe it was a mandatory occurrence. I realized very quickly, that could not be the last correspondence I had with mom. Luckily, as we went toward the courthouse doors, she was there waiting for her ride. The caseworker called to her and she came back into the lobby, her face still red and splotchy. I asked if she felt up to taking a picture with baby boy for his baby book, something he could remember her by. (Some of you may know my dad also adopted me, I do not have any pictures of my 'birth dad' eww those words are hard to use, and it is something I have wished I had at different times in my life. I knew that might be important to baby boy someday too.) She wiped her tears and said 'I know that is what would be best for him and because of that, I'll take a picture.' She cuddled baby boy close for the last time, giving him a big kiss on his dark curly afro hair (seriously he's the cutest ever).  I hugged her as she handed him back  to me making a baby boy sandwich, she thanked me and I thanked her. Then I told her that from the moment I met her, I knew that she was a mother who loved her children. I knew she was an amazing woman who had a lot to offer and I was lucky to know her, baby boy was lucky to have had her. I promised to love her son has my own forever and take care of him with all I have. Tears filled my eyes, the caseworker's eyes and continued to escape hers as she released her son into my arms.... for the last time.

 

We turned, heading opposite directions, one mother's arms empty and heart broken the other's arms full and  heart humbled.