Surgery covered!

Our insurance just denied Gracie's rhinoplasty that was done in May=( I called the clinic and they said not to worry... "insurance companies do not say no to Dr. Mackay". Before the day ended the decision was reversed and it is covered. Yipppeeee!!!

Preschool!

For the first time in my life I was the nightmare parent... talking endlessly to the teacher at the meet the teacher day and calling her at home at night. I just didn't know how Gracie was going to handle preschool and how preschool was going to handle Gracie! She has been home a year but she hasn't had anything new to deal with lately. Church nursery and speech are old news. We still have some anxiety at each but have learned to cope. I really didn't know if going to preschool would be traumatic or exciting for Gracie. Our pediatrician, Pia, really recommended that 1. Gracie go to preschool and that 2. I should NOT be the room Mom. So, I just decided to go with that. Gracie was nervous at the meet the teacher morning and kept repeating her usual... I don't want Mommy to go... mantra. Several times we practiced going in and doing our goodbye routine. She seemed excited about it all but I know from experience that at the moment we actually have to separate she panics. Mrs. Good said she would be there to peel Gracie off me and that I should head for the door quickly. My heart wrenched thinking about it. I have done it MANY times for nursery and for babysitters but her siblings are always with her. Even at church Cody is in her class and I stayed with them in class for at least the first 6 weeks. For preschool, I didn't know if she would be convinced that I would return. Does she trust me yet? Does she think that this is the next "big change"? I made sure her teacher knew to call me if she shut down or was hysterical for more than a short time. Mrs. Good was so gracious and even called me the night before the first day suggesting I bring Gracie a few minutes late so she could focus on just her and asking what she likes and if she likes hugs or high fives. But DON'T YOU KNOW, after all of my obsessing she did GREAT! Although she was a little nervous she did not cry or scream. She was SO PROUD of herself... her book bag... her outfit... her homework. When I returned she was all smiles. Her teacher said... Gracie did great, Praise the Lord! She played nicely and shared with her friends! She was so happy to see me. Sometimes when I go somewhere without her she snubs me when I get home because she is angry with me for being away from her. She was so cuddly and happy the rest of the day. I must say it felt like such a wonderful culmination of such an intense first year home. The second day of preschool was the same. The director, Mrs. Keeney, stands outside the door and said how glad she was that Gracie had such a great first day and that many prayers had gone up on her behalf. What wonderful people and what a Great God. I am sure I will again obsess over the next milestone for Gracie but I am just relishing this one at the moment!

12 Month Post Placement - that means we are done=)

Just had our final visit from our case worker today. They have to visit and do a report at 6 months and 12 months. They basically just ask a lot of questions. It was fun to be able to sit around and talk about Gracie. She has come such a long way. Jinny, our case worker, could not believe the positive differences she observed in Gracie since her 6 month visit. I loved hearing that. I remember at the 6 month visit Gracie did not want to come out of her room because there were strangers in the living room and when I made her she buried her head in my shoulder and would not look at them. 6 months later she ran out the front door to meet Jinny and sat next to her the whole time. She talked about her friend Miss Jinny the rest of the day. It makes me remember those first few weeks home. The tears before nap time and bed time, holding Grace in the back yard because she was too afraid to be out of my arms outdoors, Grace slamming her hand on the table if my Mom dared look in her direction, flopping herself on the ground when new people came over. It is kind of like pregnancy and labor... unless you stop and really think about it you forget how hard it was... you are just in love and it is all so worth it. So... you do it again. O.k. maybe not this time. We are at maximum capacity for the moment=)

Post-op and Team Meeting

Gracie had her post-op appointment with Dr. Mackay today and they also had the rest of the team see her. Nothing like 3 hours in a doctors office with a 3 year old! She has a little infection on her lip. She is on antibiotics so it should clear up soon. Dr. Mackay is so great. He is so good with Grace. He likes her strong will and says she is brilliant. What Mom wouldn't love him? Grace can eat real food again but nothing as hard as a pretzel. With all of the hamburger and hot dogs she missed over the holiday weekend, she is ready to catch up. We will start massaging her lip several times a day help break down scar tissue. I asked how long we do this and they said a year!!! Yikes. Guess she will be learning how to do it herself too. Dr. Mackay will give her 3 months to allow the swelling to go down and to see what progress she makes in speech with her new mouth. If she is not where she should be he will do another palate procedure, pharyngealplasty, to work with the tissue in the back of her throat. This surgery has no major side effects and will not be nearly as big of a deal as what she has just endured. There will be many more surgeries but maybe only 2 more before she is 8. This is a guess. We are not anxious about all of the surgeries ahead but instead thankful for the wonderful care she is receiving and God's grace to deal with anything that comes our way. We will post a picture of the lip revision when the infection clears up. They did a great job on her lip and nose but it is still healing. There will be more cosmetic revisions in the future and they will get things as close to "normal" as possible but they are upfront in telling us that it will always be noticeable. We are confident that we can help her put her cleft lip and palate in perspective throughout her life. We just sang the song in Church that says... "He makes all things work together for my good." If we are going to sing it... we might as well start living and believing it!

8 months home

Hi all. I just wanted to take a break from the all of the medical posts! Gracie has been home for about 8 months. She is doing so well. We just love her to pieces. We have to remind ourselves of her background at times because she has just become part of the family. I caught myself telling the pediatrician how this or that doesn't run in my family. Oh.. that is right... what difference would that make... she is adopted! I think about how God knew all along that she would be in our family. How He saw the day she was born and each day afterward. I pray that in heaven I am able to "rewind the tape" and see each day of her life we missed. I pray that she knows that she was fearfully and wonderfully made and that God has a good plan for her life. She is such a joy. A strong-willed and determined joy! I love that about her. Most days=) She is so helpful. She RUNS to get things or to clean up and she works so diligently. She is so obedient. I think about all the million things that had to fall into place to bring her home and it is truly a miracle. I often think about the fact that we had a choice whether or not to adopt her and it sends chills down my spine. To think we could have missed this! Thank God we didn't.

Still doing well

We are two days post-op and home doing well. Just now starting to see some reduced swelling. She continues to handle the pain like a champ. She has become more aware of the pain in her face but is equally upset about the little mark from the IV and the little scab she got on her foot last week from her shoe rubbing her foot! She hasn't seen herself yet in the mirror. She tells us constantly her boo boo feels better. When we find something she likes to eat or we make her comfortable in some way she says, "I am happy now". She pretty much needs constant care so she is keeping us hopping. She just needs someone to be with her to make sure she is not doing anything unsafe or the other kids are not swinging things or throwing things near her. There has never been a lack of activity in our house... climbing, jumping off the bunk beds, sliding down the stairs on a sleeping bag... so life has ceased as we know it. So far so good. Thanks for all of your thoughts and prayers!

Surgery Details

We are through our first major surgery!!! It went well. They let me take her back since she did not want to go with the nurse. I held her in the OR while they put a mask on her to put her to sleep. The OR was huge. Like five times my living room and with a dozen people busily getting prepared for Gracie Mei. Oh the care our children receive in this country! From a worldy perspective so few children are so fortunate. Four hours after she went in they called and said she was waking up and we could come back. She was a little scared but calmed down and slept a lot. We moved to our room and she has done great drinking and eating pureed food. Her palate is lengthened and the muscles lined up in a way that will help improve speech. The palate was the most important part so we were thrilled to hear good news about that. He closed most of the hole in her palate which will set her up for a bone graft surgery around age 8. He closed the hole in the base of her nose which will also help greatly with speech since she will not have air escaping from her nose. He said the lip revision was tough. Her repair in China soon after she was born was not a good one. He attached the muscles in her lip so now she can make the "W" sound and pucker up! Watch out boys!!! She has a lot of swelling so it is hard to see what it will look like. They say it was difficult and it will never be perfect but they say it is SO much better. To me, she looks different and I have had to hold the tears back about that. I know it sounds strange but all of you Mommy's out there with kids with clefts know just what I mean=) They gave her nose a little more definition. More nose work as she grows. They continue to say she has more ahead of her but they do not know when because every kid heals differently. As she gets older it also depends on how comfortable she is with the way everything looks and what she wants to have done. She has stitches on her lip and steri strips covering the other stitches aboe her lip. Some swelling. I don't think the kids will be too scared but scared enough to be gentle I hope. As we close out this day I think of all the wonderful care Grace has received and how she has been covered in prayer by so many people who love her. How can I be anything but thankful!

Pray For Gracie Mei!!!

Hi all,
As we wrap up Mother's Day festivities my thoughts turn to Wednesday. Grace will have a 3 hour surgery at Hershey Medical Center. The details are on older posts. Can you join us praying for Gracie Mei and her surgeon, Dr. Mackay? I imagine the surgery will start late morning or early afternoon. I will update the blog when we hear how things go. I am nervous and excited for her.

Surgery May 12

Gracie will have her big surgery on May 12. We went to Hershey last Friday for a pre-op appointment. The surgeon continues to put me at ease. He has done this so many times. There are other posts that go into detail but basically they will close a hole that is in her nose, attach muscles in her upper lip so she can move it, clean up scarring, and most importantly lengthen her palate. Her uvula (hangy thing) in her throat and surrounding tissues are so far from the back of her throat that she cannot speak clearly. Lengthening the palate will help tremendously. Later they will probably do another surgery to work on some of the surrounding tissues in the back of her throat. She has a great deal of air escape from the hole in her palate and nose so closing the nose and some of the hole in the palate will really help with that. Kids respond very differently to this kind of surgery. Most do very well. I am sure she will do much better than her Mother;) She must go 6 weeks with only soft food so that will be tough and at first she will need around the clock care. I hear many parents say that it is a time of bonding because you are with them 24-7 and providing for their every need. I look forward to that but I am concerned about getting my Cole, Julia, Cody time in too. I am sure they will enjoy some extra time with grandparents and friends and certainly extra time in front of the tv! We will be after you all to be praying as it gets closer.

Dental Surgery

I am late posting this info. but Grace had dental surgery. It all happened so quickly and was such an answer to prayer. Her insurance kicked in on a Monday which allowed us to make a desperate plea for the insurance company to allow us to use the dentist we wanted to use. They said yes on Tuesday and our dentist office had a cancellation and got us operating room time on Friday of that week! It all had to happen quickly because it needed to be done at least 6 weeks before palate surgery. Turns out the lady at the dentist office that worked so hard to make it all happen is my friend from high school's Mom. Insurance covered the surgery completely!!! It was a very expensive procedure. Basically they just took out all of the decay and put in a lot of metal. They had to pull one tooth. It healed well. She did great with anesthesia and didn't need pain meds afterward. PTL!

1st Speech Therapy Session/Surgery now May 12

Hi all! We had our first speech session today at the cleft clinic. Grace did so well! At first she didn't want to talk to the therapist, Maureen, but after seeing the prizes that were in jeopardy she decided to cooperate. Maureen is fantastic. I learned a lot and we already worked on some things this evening. Grace LOVES learning right now so that makes it easy. Hope that continues.

Grace's surgery will now be on May 12th. The surgeon needed to reschedule for some reason.

We are still awaiting news to see if her dental work will be authorized and paid for. We are so hoping for good new tomorrow or the next day.

Thanks for checking in!

Surgery Scheduled and Dentist Visit

Gracie Mei's surgery on her lip and palate will be May 5th. It will be at Hershey Medical Center and she will spend one night most likely. Again, it is a complete lip revision to make her lip functional and to clean up some scarring. They will also lengthen her palate with a procedure called a z-plasty and attempt to close a hole in her palate. It will be a three hour surgery. She will be on a soft diet for 6 weeks.

We also finally had a dental visit. The clinic recommended Dr. Ross and we could not be more grateful! I had nightmares about how the visit was going to go. You just don't want a kid with a lot of mouth work ahead of them to be traumatized by any doctor. Well, she is in great hands. They didn't attempt to clean her teeth or do x-rays or anything. Dr. Ross played and joked around with her until she was ready to show him her mouth. She did a great job and he got a good idea of what needs to be done. It is quite extensive. 5000$ extensive!!! And that is JUST the dental fees NOT the hospital fees!!! We are working on insurance coverage which can be tricky. Cross your fingers! She will be sedated at the hospital to do the work. The biggest question is whether or not he will be able to repair the top teeth on the cleft side He will take x-rays immediately before the surgery so we will not know until after it is completed. The alternative to restoring the teeth is pulling the teeth. This is really not ideal but might be necessary depending on the amount of decay. They are not adult teeth but holding on to your baby teeth is important. We will pray they can all be restored.

It has been awhile. Thanks for checking back on us!!!

Surgery Soon

Hi all. We had another team visit at the cleft clinic today. It started out with a long wait in the waiting room with an 8 and 4 year old boy who asked me every question imaginable about Grace. Where is she from? Did you go the whole way there to get her? Where is her real Mom? Why did her foster parents abandon her? What is wrong with her? After these question and more the 4 year old says... "Well, you are not her real Mom you are just her Mom for now." I was proud that I kept a smile on face and of my quick answer... Yes, her Mom for now and forever. Aren't I lucky to be Gracie's Mommy for now and forever! I read a great article the other day that made the point that it does not matter how rude someone is or intrusive or offensive their questions or comments are. It is YOUR reaction that impacts the child. Getting angry, embarrassed, and defensive just shows your child that they have something to be ashamed of. The article advises to answer calmly, assuredly, educationally or to use humor to let the person know the questioning was out of line. Here are a few lines from the article I love...

Empirical research has strongly supported the notion that a parent's attitude toward a child's birth defect is the single strongest indicator as to how well the child will adjust. Parents who had healthy attitudes toward their child's cleft had children with a strong positive sense of self. It is no coincidence.

If you convince your child that you love him, then he sees himself as lovable. Even if your love is unconditional. If you cannot deal with any aspect of your child, then that aspect becomes his millstone.

Anyway, back to the team visit. Again, we just LOVE the team there and we were so proud of Grace. When we saw Dr. Mackay (the Dr. who will do her lip and palate work and plastic surgery) Grace started singing Amazing Grace so Dr. Mackay started calling her Amazing Grace. He must have said it 10 times. It was so sweet. Maureen, the speech therapist, was so impressed with Grace. Her schedule is packed full but she promised to make a spot for her every week.

Hershey Med. will call us within the next 2 weeks to schedule surgery. We are thinking sometime in Feb. or March. Grace will have 3 surgeries at one time. A total lip revision which will attach the muscles in her upper lip, close the hole in her nose, and cosmetically improve her upper lip and area under her nose. That was all 1 surgery. The 2nd being a Z-plasty which lengthens her palate and the 3rd being an attempt to close the hole in her palate that was not closed in China. He blocked off 3 hours to do the surgeries. 3 hours will be a long time to be praying in a waiting room! Our prayer is that he hits it out of the park.

Dr. Mackay continues to believe that Grace will need much repair. After the Z-plasty he is thinking she will need Pharyngoplasty. After Pharyngoplasty is P-Flap which we are really hoping to avoid because it can cause sleep apnea which is very serious. The reason for these surgeries is to enable her to speak clearly. If she speaks well after Z-plasty there will be no need for more surgeries of this nature. We get the impression that this is very unlikely for Grace but we will pray to this end as we know God is able. There are other surgeries later, age 8 and beyond, for other reasons... jaw alignment... cosmetic changes... orthodontia... and bone graft surgery.

A friend of mine asked me these questions... What do you fear the most? What is the "worst case scenario"? Do you believe God will be faithful in it? Although I have trembled through every possible worst case scenario before bringing Grace home I think currently, and very thankfully, my new "worst case scenario" would be that she would not be able to speak clearly. I guess eventually if this is the case we will lower our expectations and assume that she could only make as much of an impact on this world than a man we all know who was also slow of speech... Moses;)

Grace's First Christmas

We had a wonderful Christmas as a family of 6! Grace opened a Kai-Lan big wheel first and she would not get off of it. She would just wheel over to the tree to unwrap her next gift while on her new bike. Cody got a Harley big wheel and when Rob asked Grace if she wanted to ride Cody's bike she rode her bike next to it and stuck her foot on it while still on her bike. It was so cute.