Sunday, November 18, 2012

Save the Best for Last

After Rykers lip and nose repair, we had 3 more surgeries, totaling 5, before he was a one and a 1/2. One easy one for ear tubes, and two rough ones to repair his soft palate. Since the day he was born, it seemed like we were either recovering from a surgery, or gearing up for one . I kept holding on to the idea that after his second soft palate repair, when he was a year and a half, we would have a 2 year break. Ryker wouldn't need another surgery until he was 4! I seriously felt like we were in pure survival mode, but I knew it would be coming to an end. At least for a while, and I clung to that. When Ryker turned one, we not only celebrated his birthday, we celebrated a tremendous year survived. Ryker had been a champion through it all.

Rykers One Year Old Pictures- Unedited of course:)

Don't you just want to squish him!?

When Ryker was 18 Months old he had surgery for the completion of his soft palate repair.We would be staying overnight, and due to my now expertise at hospital stays, I mentally and physically prepared. As ready as I was, I never could have guessed the rollercoster we were about to get on.

We had never had a better experience with a surgery as we did that time. Not only did we not get bumped for surgery time, prolonging a very empty toddler tummy, but they actually called and had us come EARLY! Nice! Check in was a breeze, and surgery was a short hour. In recovery, Ryker just slept. He has NEVER just SLEPT. Normally he is flailing about, pulling out IV's, screaming, causing major stress and worry on himself and us. Totally understandable, but still. So when he just SLEPT in my arms, I was in HEAVEN!
They took us to our room. A PRIVATE room! Sweet! And Ryker continued to sleep. Having been all prepared for the worst, we were almost board with the extremely calm situation. How nice! Later in the night when Ryker did start to get fussy, they offered to bring in a FULL size hospital bed so he could sleep in my arms while I slept. WHAT?! You can do that?! Why the hell had no one offered this luxury to me before?

Note: Will DEMAND a full size bed from now on, and if you are going through a similar adventure, Demand that you DEMAND one from the very beginning! It made everything WAY easier and doable.

We were riding high on a rather not so sucky hospital experience until we got a call from our neighbor first thing the following morning. She had gone to let our dogs out while we were at the hospital, when she found Max, our 10 year old Boxer, lying on the floor in bad shape. She had no idea what was wrong, but it was clear he was dying. We were an hour away from home and still did not have the "all clear" to be discharged from the hospital with Ryker.
It was awful. Max was the dog we had had our whole marriage. He was our first "child," and the sweetest most loving dog ever. Knowing he was dying all alone without us, was killing me. As soon as we could we rushed home only to pass Ryker off to my Mom, pick Max up from where he lay in extremely bad shape, and rush to the animal Hospital.
He died with us by his side within minutes of getting to the vet.
Apparently he had a tumor somewhere inside that had ruptured. Sadly, very common for boxers, there was nothing we could have done. I know he waited for us.Waited for us to say goodby. This was such a major blow on a day where we were already running on empty emotionally. Honestly, it was a rough day, but we  survived it.
As for Rykers recovery, it was the easiest and fastest he had ever had, and we were able to quickly return back to normal. God threw us a bone on this one. Pun intended.

I know that story was kind of a buzz kill, but as awful as the timing was, it still was the beginning of a long awaited, much deserved break. We emerged from our fog of surgeries and Doctors, and ALL the fun tid-bits that come with them, and entered a new normal. And I cherish that "normal." I felt like I could breath again. We played and worked and played some more, and Ryker no longer sneezed concerningly large amounts of food and snot out of his nose. That alone was simply fantastic! His repair had officially moved into the "mostly done" section. Yay! We have at least 2 more surgeries to go. One when he is 4 for his hard palate repair, and one when he is 6 for his gum line repair. After having 5 in just over a year, we can totally do two in a 5 year stretch! Fagetta 'bout it!

Ryker at two years old with the family who loves him. And yes, I am TOTALLY showing off, but I AM his Mother and he IS absolutely darling!

(Photos untouched and totally real...told you our surgeon rocks!)


Kaitie Shivak said...

My husband and I just found out December 21st that out little guy (due May 1st) has a cleft lip and palate.

We start the process of meeting with doctors and surgeons and everything next week. Thank you for sharing your story, it gives me hope that we can and will get through this.

Anonymous said...

I have just spent the past hour reading your blog. With tears down my eyes and a huge amount of HOPE now in my heart. We were told last week at our 20 week scan our baby girl has a unilateral left lip and palate.
Thank you for sharing your amazing story, your journey inspires me, scares me, but more importantly gives me the power, knowledge and HOPE that our baby girl will be ok.
I just want to hug you right now!
Many thanks again

Anonymous said...

Love your blog. Gives me so much hope. My little man (8mon.) has a cleft palate. Wondering about speech and your journey thus far. Thanks so much for sharing.

JohnnyAndMe said...

Hello, my six month old son Jonathan has a unilateral cleft lip and palate that looks nearly identical to Rykers. Jonathan had his lip repair at 4 months (which looks ok I think) and he will have the hard palate repair at 9 months of age. I really do wish I had seen your blog prior to my son's birth, it would have been super helpful! I'm wondering how Ryker is getting on with speech etc as that will be our next hurdle. Thanks for putting together such an amazing account of your experiences so far. Your knowledge is invaluable!

Abby and Jonathan said...

Hi again, I was interested to read on the 'kids with clefts Utah' website that Dr Morales does not repair the cleft palate until 4 years of age. My son Jonathan's hard palate is due to be repaired when he is 9 months old! I am concerned about speech problems so wondering if we are doing the right thing. Do you have any thoughts? We have an email on our blog now :)

Sydney said...

Hi my name is Sydney, and 10 years in March will be the anniversary of my sisters death. She was born with a cleft lip and cleft palate. She was born with them because she was born with a Trisomy 18 which is a genetic disorder. My family went through some tough times. Even though she had a cleft lip and palate she was the most beautiful baby girl I have ever seen. Your family got to witness your baby boy go through the surgeries to get his cleft lip fixed. My sister did not get to go through that. Babies that have the same disorder my sister had usually do not survive past the third trimester but my sister was a miracle. Your son had the opportunity to grow up, to me that is a great opportunity and miracle.

Sydney said...

Hi thank you for doing this blog, it helped me understand more about this disorder that my sister and your son went through. I am glad your family got a miracle and got through it.

Unknown said...

Hi there! I have been reading all your blogs for the last 2 hours. My emotions were mixed with anxiety, fear, joy and excitement. I am 35 weeks pregnant now and just waiting for my baby boy with bilateral cleft and palate to arrive! I am so happy to see photos of Ryker from when he was born till his post surgery photos and indeed he is a very handsome young man! I am also glad to know that it is normal to feel all these roller coaster emotions that I have been feeling since we found out about our son's condition. Yes I am scared but seeing you guys conquered and accomplished so much makes me feel thrilled and excited! Again, thank you thank you so much!

Much love from Sydney Australia��

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