We are 10 days post surgery and Luke's nasal stents have fallen out. :-(He was playing and bumped his nose and broke the stitch that was supposed to last a month. Clearly that didn't happen.
Given the early fall out, his nose will more then likely not be perfect after everything heals up. He is definitely going to need to have a nose job when he is 5. Not a huge deal and we will be able to do it before kindergarten.
He is getting back to his normal happy camper self. See a few pics below!!
We are 1 week post surgery and things are going well. Like has these crazy looking nose Stints in his nose that will be there for the next 3 weeks. They ensure he can breathe, even if he swells. They also catch a lot of snot (and food) from a 2 year old.
We just weaned him off the narcotics and he is pretty good with Tylenol, so long as we stay on too of it.
The doctor was unable to close Luke's soft palate so he still has a home between his mouth and his nasal cavity. We go back in July for another surgery where they will close the soft palate. Then in January of 2015 they will remove the prosthesis and close the palate. So 3 surgeries in one year. Not ideal but it needs to happen. We think he will then have further surgeries when he is 4 (nose), 7 (alveolar bone graph), and hopefully that is it. Elective rhinoplasty seems to always be an option at 16, if needed.
Speech evaluation is this week so we are moving right along!!
Here are a few pics from this weekend..it's pretty rough going!! Hopefully this week we get to see more if his new smile!!
4 days post surgery - beuising gets worse before better
Luke did great today! He had a rough start - up at 4 am local time and no food until after surgery. I did get him some chill drugs as soon as we checked in and things went well after that. The surgery lasted about 3.5 hours in total and I got updates throughout.
He is eating and drinking (stir fry and a smoothie) and on a good pain mgt regiment.
Thank you all for the prayers. / offers of help, etc. when you have 4 kids in 5 years, ppl either step up or step out of your life. I cherish everyone of you that has stepped up. If you are reading this you are a step up friend. And we want you to know that we appreciate all of you that are supporting and just loving Luke and our family!!
We are in Utah, flight was good, albeit long with an almost 2 year old on my lap.
At Detroit airport
On my lap - he's a big lap baby!
Little guy worked his way to the ground and took a nap on the floor of the airplane!
My sweet friend Amanda picked me up at the airport and drove us to our appointments yesterday. We then had dinner with her family. So blessed by this crew!
We are seeing an insane number of doctors...here is the line up..
ENT - suggested ear tubes. He also showed me that I can visually see my sons nasal cavity if he opens his mouth wide enough. I also got to see how lunch is regularly left in his nasal cavity due to the cleft palate.
Plastic surgeon - suggested we close Luke's lip, fix his nose a little, and close his soft palate. He said Luke will only need the prosthesis (fake plastic roof of his mouth) for 12m. The hope is that his natural bone grows behind the prosthesis over the next year.
Orthodontist - fit Luke for the prosthesis
Speech therapist - told us to get started ASAP when we are home with speech using both medical insurance and our school system.
pediatric dentist - looked at one if his teeth that may need a filing.
Neurosurgery - consult for genetic markers given the cleft birth defect
We are on for surgery tomorrow morning at 8 mountain time. I am sad to see his adorable cleft go but happy he will be able to communicate better soon.
Please pray for skillful surgeons and a peaceful recovery!!!
Many adoptive parents think this is the best day of their life. They remember the first day they saw their child in this magical way.
Me......not so much.
After meeting the foster families that so loving took care of both of my children, gotcha day for each of them was, in reality, not magical. It was the day my child was ripped away from the only family s/he knew. The day that my son crapped himself 4 times b/c he was so scared of us. I thought it was an intestinal bug...nope, just a freaked out 2 year old. It was the day that the only family he knew was ripped away from him. The day he looked up and saw...us.
It was magical for us b/c we love them now. And we are happy each of them is with us. But lets face facts here people, its not magical for our kids. Today is the 'celebration' of Emma's 2 year gotcha day. It is impossible for me to celebrate this day and not recognize the loss that occurred on that day that when we gained so much.
I saw the hurt in her foster sister's eyes when she saw and hugged Emma. I saw how much she missed Emma and how loosing Emma had an impact on her. It was kind of like seeing 'oz behind the curtain'.
Its awesome to know the truth of her foster family (that they loved her so much) but the fake adoption happy notions of how she came to our family that I once enjoyed are now gone.
I realize Emma coming with our family is what had to happen. She couldn't stay with the foster family in real life. Too many constraints in the real world for that to happen. So she is stuck with us - and for that we are grateful.
On this anniversary, I am praying for Emma's foster family and, frankly, her birth family.
I pray that the foster sister feels peace with her foster family (she is not currently on the list for adoption). I hope she can find a place in this world that keeps her safe and at peace.
I pray that their family chicken gets replaced (they had to kill the one they had when they learned we were coming for lunch!).
I pray that both families knows how grateful we are for what they did. That they know that we realize we are not a better family then them. We are not....we are likely not at all what they had envisioned for the perfect US parents adopting their child. We were just born in a country with more resources.
Happy 2 yr anniversary with our family Emma. We are ETERNALLY grateful for you in our family. You are a tiny, spunky, little sassy girl. And we love you.
So...we have been home for about 1.5 weeks and things are starting to calm down. Jet lag is behind us THANK GOD. My little sister stayed with us for the first 5 days which were plain awful and we owe her and her hubby a world of gratitude. We are absolutely trying to get into a groove and attempting to figure this 4 kid thing out. It is coming along!
Concurrently, I have been trying to determine Luke's next steps in terms of his cleft. As I briefly mentioned the day we met Luke, his cleft palate was significantly bigger then his referral indicated. His referral indicated his cleft was the soft palate only but when we saw him it was clear he had a hard palate cleft as well. Meaning a few stitches are not going to fix this problem.
So...I have been researching/learning a lot since we came home about cleft lip and palate children. In terms of care, I have been looking at our local hospital (U of M), Beaumont in Detroit, and a hospital called 'Primary Children's' in Salt Lake City.
U of M is indicating we can see a nurse in January, a plastic guy in February, and we could schedule his 1st lip surgery for 4/1. We could then schedule his palate surgery would be sometime in the fall. We could start speech therapy before fall but, in reality, it sounds like we have to wait for the palate to be fixed in order to start hard core speech. Frustrating news of a mama whose child is almost 2 and cannot communicate besides yelling and pointing (we are teaching him signs too). He has had substandard care his whole life and the best we can do is a palate surgery almost a year after he comes home? To boot, U of M didn't have a clinic so I had to see all of the doctors separately. That would include a 1) Plastic Surgeon, 2) ENT, 3) Genetics Doctor, 4) Echo/Cardiologist, 5) Otolaryngologist (hearing/speech), 6) Dentist/Ortho. That is 6 different appointments/visits that I need to make. For a mama of 4, not exactly an easy task.
Beaumont was a little bit better - they at least had a clinic so I could get in there all at once and see the plastic guy, the ENT, geneticist, etc. I have that appt next Wednesday.
Then there Utah. This team does a specific type of cleft palate repair that, from my knowledge, is only done in Utah and a few places in Europe. They have a DDS on staff at the hospital (he runs their cleft clinic) who places a prosthesis into the child's cleft palate. It is basically a fake roof of their mouth. They leave this prosthesis in the child's mouth for a few years while the child's natural bone continues to grow. Meanwhile, the child learns to speak, eat, etc using a 'normalish' mouth. Then at 4-5 years, they take out the prosthesis and see what is left to repair and the palate is then closed. Lots of pro's to this method including less surgeries down the road. It also gets us into speech now vs when he is almost 3. Because the palate is not forced shut at such a young age, less orthodontic repair/procedures will be required when he is pre teen/teenage years. At this point, it is looking like enough Pro's to cover the 'con' of traveling to Utah.
Amazingly, Utah had two cancellations/openings that allowed us to book a clinic appointment on Monday 1/13. They said that if we liked the team, they had a cancellation and could fit us in on Wednesday 1/15 for the prosthesis surgery, ENT, and lip repair. In surgery and appt land, this is a huge blessing! They had to line up a ENT, Plastic Surgeon, and a DDS for his surgery. But, it all worked out!
Due to the insane amount of travel I have taken lately, I also had enough points to cover the last minute flight to Utah without purchasing a ticket. Luke is just under 2 so he can still sit on my lap!
To boot, one of my high school friends now lives in SLC and offered to pick me up from the airport and let us stay at her house. She has 3 kids so knows how crazy this is going to be but still offered. Seriously?!