Tie

Please visit my friend's blog today. She is advocating for some special little ones in China that need a home. One of them is Tie, who lives in Shanghai with Chuan. Tie is the last of 28 children who were part of a camp last year called Journey of
hope to teach kids about adoption and get them exposure to potential adoptive parents!!
Tie is such a cutie. He needs a home!!


- Amanda & Roland

LOA

I wrote about this last week but somehow it got lost. Last Wednesday we received very important paperwork from China, the LOA also called Letter of Acceptance or Letter Seeking Confirmation. It's a step that brings us closer to China and our two boys. Basically it means more paperwork in a good way! So our next step is paperwork on US Immigration side. We have already been pre-approved based on our original application back in March but this is more specific with the boy's names and special need and information about the orphanages where they live. Hopefully the next step takes 10-14 days so we can get to the next step, then eventually TA, or travel approval. We are already looking at airfares and possible travel times, and, of course, finances (uuuggh) but are praying for God's continued blessings along out journey!!


- Amanda & Roland

P-flap

posterior pharyngeal flap or p-flap for short
This proceedure is done after lip and palate repair if the childs palate is still too short. It takes tissue from the back of throat and loosens it on 3 sides by cutting and leaves it connected to the blood supply on one side and the tissue flap is moved and "flapped over" and connected to the end of the back of whatever palate is trying to be lengthened.

How do you know is the child needs it? First of all Dr can SEE if palate is short. Second the speech therapist can do simple manuevers to see if air is escaping out of the mouth behind the palate. Third there are some more invasive tests that can also be done to evaluate like scoping by an ENT to watch muscle movement and some other tests.

Why do all these? First of all, you don't want to have any unnecessary surgeries. Second, overcorrection of the short palate can block the back of throat too much and lead to sleep apnea and snoring which are no fun and can create more problems.
So, some kids with palate repaired need to have some sort of lengthening done to palate. That was the case with our oldest son.

Our experience:
We went in early morning for surgery and he was out after 2 hours. By noon he was in ICU. For anyone not experienced with cl/cp surgery, most stays are 1-2 nights in ICU until child can start eating and drinking enough and swelling after surgery goes down. They usually stay in ICU as a precaution so if there's any breathing or airway problems it will be noticed right away. So staying in ICU has it's own level of associated fun. There are bells and monitors going off constantly! One major plus is nurses have fewer paitients so child's needs are addressed immediately.
After any surgery with young children there's usually crying screaming and or a disoriented state. This can be a little scary for parents and kids. We always bring a familiar toy and blanket to help. Our son does not do well with Demerol yet they often insist on using it. He screams and hollers usually until it wears off. After he came to us in ICU I had them give oral liquid pain meds right away. He was awake enough to take it. They alternated a Tylenol with codeine and a regular Tylenol bc he did not like the taste of the codeine product.
He vomitted and his face was swollen and he complained of stomach ache for a while after surgery. We gave a phenergan suppository which worked great.
He took only a few sips of liquid the first night. He does not eat popscicles OR jello (never has don't know if he was traumatized by them in the past surgeries??) so his doc ordered full liquids like ice cream that evening when he came to check on him.
By the next morning he was significantly better and the swelling had gone down due to the steroids.
We went home and he has gotten slowly better each day since.

What did I not expect? Swelling was a litttle more than I thought, but resolved quickly.
He complained a lot about neck pain for about a week. Stiffness in the back of neck. In fact he was standing on our bed about a week after surgery and bounced as he sat down and he cried and caught himself in the back if the neck and said it hurt. Usually the device they use in surgery to stabilize the neck connects to their mayo instrument stand and the neck is hyperflexed. Imagine leaning your neck totally back and opening your mouth as wide as you can and leaving it absolutely still for 2 hrs. I would have some crick in MY neck!!
Also he had a bit of snoring for the first two weeks. The first 6 days he had me a little scared at times. We had him sleep in our room on a futon and he seemed as though he was stopping breathing. He also had a lot of nasal congestion and swelling due to the probing of the nose for the fistula and I think this caused him not to be able to breath out of his nose and the pflap swelling was keeping him from breathing well out of his mouth. Not sure if this is "usual" for pflap or how much nasal swelling there usually is.
The only other thing is we have Tubes in the ears and after surgery he had some drainage from one ear.
It has now been about 4


weeks since surgery and he is completely and totally back to normal.



- Amanda & Roland

Cleft lip and palate

I thought i would write this for anyone who is considering a child with cleft lip/ palate or even if they are not: People ask is cleft lip and palate a difficult special need? The answer is mostly no and sometimes a little yes.
First of all the majority of cl/cp kids are healthy and happy. Kids from China rarely have associated "syndromes" you can read about, although it does occur. They need several surgeries anywhere from 2-10 during childhood but most are outpatient or overnight stay with fairly easy recovery. There are doctor visits and check ups lots of folks use a "cleft team" which are usually located at larger metropolitan centers, but you can find experienced plastic surgeon almost anywhere. Speech therapy is needed in varying degrees depending on severity of cl/cp, age of child at repair and general temperment and ability of child. Some need little others need lots. Some need private speech, others just need what school or early intervention programs can provide.
The part where I feel it can be a little challenging SN depends mostly on access to specialists and speech therapy. Also the surgeries can be scary. It's hard to watch your baby be wheeled of to surgery time and again for surgery. Knowing they will wake up hurting. I wonder if at some point he may say no more surgery, too much pain. Already he refuses pain medicine after surgery
because it tastes nasty.

Only other thing I can think about is some parents would not want their childs special need to be obvious to others. A child missing limbs or with cl/cp would be more obvious wheras some conditions might not be so obvious. For us that was not really a concern but it is for some.

These are just some general thoughts. If anyone is thinking about adopting a child with cleft there are tons of Internet resources and several great and informative yahoo groups to join and find out more!! Obviously cl/cp can have some challenges but is a SN that is not a big deal. Most of the doctors appointments are arround surgical times. Our son has been home 3 yrs and had 2 palate surgeries plus tonsils/tubes so 3 surgeries.

Speech therapy has been covered by insurance and he gets extra speech at school. The last year we went with just the school speech, but now that he's had palate extension we will resume private speech as well.


- Amanda & Roland

Cleft lip and palate repair

Several folks have emailed me and wanted to know about our surgery experience with cleft lip and palate. Our son was born with cleft lip and palate.
He had his first surgery in China by Love Without Boundaries a GREAT organization that helps children around the world. He was actually on their website homepage for a while before we went to get him in 2007! He was about 15 months old at that time.
When he came home to US at age 3 and he had palate repair about 4 months later. The surgeon told us his cleft was large, one of the biggest he had ever done. It seems a lot of us China adoptive parents with cleft kids hear that phrase. Anyway, he stretched the tissue and made a new palate. The problem with stretching the skin so far is that some of the tissue just cannot survive either the trauma of surgery or just having to be stretched so thin. So, we noticed a few months later he had a small hole right in the middle and a little "ridge" where the skin had met in the middle. Not much but enough to make it hard to make to "p" sound and other sounds needed in English speech! So we went back to surgeon and he said it was too soon for more surgery. He recommended we see orthodontist to make an "obturator" which is sort of like a retainer to cover the hole. So we did. The obturator stayed in 1 1/2 years and then in the fall of 09 one of the bands broke (think like braces) they do that especially when they've been in a while and the mouth is growing,etc. So we rushed to orthodontist and removed it. It just popped right off easily.
Next we went back to surgeon to re-evaluate. It was time for more surgery. A posterior pharyngeal flap, or p-flap. Two surgeries actually. First tonsils needed to come out. The tonsillar tissue is around the area in the back where the p-flap would be and surgeons like it to be gone so tonsils are buried then cause trouble later when they grow or get infected jeapordizing the palate repair. So, out with the tonsils!! As a side note we also had tubes in ears at the same time. Our son never had them put in although surgeon had recommended it at time of first palate surgery. We didn't have an EnT where first surgery was done and didn't feel the risk of anesthesia was worth it given he had no problems with hearing or infections. But since he was having tonsils, ENT said he would look at ears and if there was fluid, place tubes. Well, there was fluid so my boy got tubes.
Without tonsils now and with tubes, we waited 2 months for healing and school to be out and ready for surgery number 2, the p-flap.
NOTE: I will end here and post another about p-flap surgery separately.



- Amanda & Roland

Update on our progress!!

For any of you who have joined our journey you know we are headed back to China!! We have always had a great love for children and felt led that this is why God put us on this earth.
We have our two wonderful biological daughters who are such a blessing, our little star from China who is so full of energy. He never skips a beat and has the personality of 10 adults!! We have two sweet African American babies who have been with us 3 years as foster children and already have their place in our family. They are such a joy and never stop making us smile!

So now we are so happy to be adopting not one but TWO boys!!

We have been foster parents for several years and have prayed and prayed for children who wanted to be a part of a family. There have been some big disppointments there, but around the beginning of 2010 we started looking back at China. Initially we were thinking we would ask for a girl. I got an email on January 7th about some waiting children on a list. When I went to the site there was one little boy who story just touched my heart. He was 8yo and had a rare genetic disease. They had brought him to camp to learn about America and being adopted. Workers at the camp said he was always the first to raise his hand when they asked "who wants to have a family?". His smile won my heart!
We also found another child, an older girl on the agencies list and wondered if God was calling us to adopt two? At first we thought that was not possible, but after further talking with the agency and praying about it we decided we would pursue two children but not the girl as they were so close in age. After more talks with the social worker God kept confirming that Chuan was indeed meant to be part of our family. He had been on the agencies list for over 6 months but when folks would find out what was wrong with him they would not call back. I began looking and Reading and contacting everyone we knew and even many we didn't know!! I sent emails to several specialists hoping for answer and more information. Finally we found what we needed and with medical experience felt we could care for his medical needs We even found a child adopted from Guatemala living less than an hour away who has the same disease. I can't tell you how awesome it is to speak to another parent to find out first hand information. To top it all off, this childs grandmother works with my husband! When we spoke with the social worker she told me about how no one ever called back about Chuan and that they really never thought he would be adopted and that the nannies at his orphanage told him they would always live him and be a family if his family did not find him. My heart was aching to go and bring this little one home to us!
After sending in our request to adopt Chuan, we continued to pray and search websites and lists for other children whose needs we felt we could handle. Finally after many files, different ages, medical problems and orphanages we found Dang. He has cleft lip and palate like our first son from China and also had an eye problem. We aksed for updated information an have learned he is blind in one eye. After lots of prayers and waiting we were so happy when China approved us for the second boy!
Fastforward to June, our paperwork went to china on the 9th and we are now in the long wait for lots more steps and more papers and finally travel to get our boys.
Please pray that God will keep them healthy and safe
while we wait. Pray that he will prepare their hearts to be a part of our family. Thank you and God Bless


- Amanda & Roland

Happy Easter

Our first happiness boy had a great time hunting Easter eggs with his
friends!! Tonight he told me his friend Kenzie's mom has a baby in
her belly. He said my belly would have yo be too big for him so it was
better to go get him in China. What insight!! :)