Thursday, June 24, 2010

Post-Op Visit

Hannah is recovering nicely. The problem the last few days has been how to keep her from being as active as she wants to be! We've been visiting the library and reading a lot, doing puzzles, painting, and other more calming activities. She's still limping slightly and tires easily, but is ready to take off and GO. Go turn cartwheels, Go jump on the trampoline, just GO! She can't do those things quite yet though. Her surgeon was happy with how she's doing, both hip-wise and mouth-wise. As far as activity level, he said I could let her start doing a little more. He said she could swim anytime, which made her very happy. Hannah asked him if she could run and play at the park. He said yes, but to be very careful and cautious. Um, right. I think we'll skip the park for a few more days. At this point, she can do whatever she can tolerate as far as her hip is concerned. What we have to be careful with is not bumping her mouth and messing up the graft. As far as food, he said she still needed to be careful what she ate. No hard foods such as chips, pretzels, etc. But he did tell her that a small cheeseburger and fries from McDonald's would be just fine. Guess where we had to stop for supper on the way home? We go back in a month and they will take x-rays then to see if the bone is there in her gumline and growing. But basically, he said to have a nice summer. Sounds good to me!

Saturday, June 19, 2010

Feeling Better

What a difference today has made! Of course, the fact that grandma came to visit might have something to do with it. The bruising on Hannah's face is worse, but the swelling is better. (You can't tell in this photo, but she really does look like someone beat her up.) She's able to eat some non-liquid food now too which has made her happy. Still very soft food only, but she managed some eggs, some spaghettios, and some mandarin oranges cut up really small.

Hannah's hip is still bothering her quite a bit, but she's off the heavy-duty pain medicine (mostly - may still give it tonight at bedtime for one last night) and on just regular ibuprofen. She's walking around more too and spending more time off the couch than on it. Though she's still walking very carefully, very slowly, and hunched over like she's 90. But she's making progress. She even managed a shower tonight, despite her protests that she didn't need one (you know, since her last one was *only* 4 nights ago..) Well, she sort of managed a shower - let's just say parts of her body got clean. We'll try the whole thing tomorrow. :-)

She also managed a trip to Wal-mart with grandma. There was absolutely no way she was going to be able to walk through the store though, so we got her the wheelchair. She was a bit self-conscious until I put Sadie in there with her..then they thought it was a grand adventure.

But the *real* sign she was feeling better? When she announced that she had to get out of "these clothes" (just t-shirt / comfy shorts) and "put on something fancy". :-) Yep, the princess is back. :-)

Friday, June 18, 2010

Bone Graft Experience

This post is primarily for a couple folks I know who have younger children with clefts - who will have this surgery eventually. So, if that doesn't apply to you, feel free to read on if you want, but it may be a much of medical mumbo jumbo. :-)

We arrived at UAB hospital EARLY Wednesday morning (I think it was about 6). Surgery was supposed to be at 8:30, but I think it was more like 9:30. We had to go to the office for admitting first to pay the co-pay, fill out forms, etc. It was a very different experience than at Children's. Not better or worse - just different. Then we were directed to a surgery pre-op area. When it was time to prep someone for surgery, they called them to go to the back to get ready. They were only letting the one individual who was having surgery back (and later when they were ready, they'd get a family member to come sit with them). But being a minor, they allowed me to go back with Hannah and stay with her the whole time. She was the only child I saw..though I know from the nurses they actually had several children that morning. When we were in the pre-op room, it was pretty standard...vitals taken, meet with nurse, anesthesiology, dr., etc. They all asked the same questions. Interestingly, the all asked me how much she weighed and how tall she was, but not once was she actually weighed and measured. Just different because it seems like at Children's they are ALWAYS weighing and measuring! I knew how much Hannah weighed but didn't really know exactly how tall she was. They kind of laughed when I answered "tall enough for most rides at Disney World, but not tall enough to touch the bottom of a 4 ft pool" Everyone we met in this area was super nice. Any fears I had if it not being as "child-friendly" were erased. In fact, she may have gotten more attention being one of only a few children they saw. They actually couldn't find a child-size gown though, so Hannah was a given a gown that would fit me! Seriosly. I wasn't sure they'd be able to find her in there!! Hannah was pretty funny through the whole thing. She played video games and watched tv mostly. But she was not shy about answering questions honestly. "How are you doing today?" got the immediate answer of "bad. Want to know why? Because I have to have surgery". But when it was time to go, she seemed pretty comfortable. The nurse who took her was great and had her laughing as she wheeled her to the OR. They didn't put her IV in until she was asleep from the mask first. I actually heard of a slightly older child (9 I think) that day who was given the choice of an IV before or after and she chose before.

Anyway, surgery was about an hour and a half. I was directed to a waiting room area to "check in" and leave my cell phone number. Then I was able to go downstairs and get something to eat before heading back to the waiting room area. When it was over, her surgeon called the waiting room phone to tell me everything went well and she was headed to recover. It was probably a good 45 minutes later when I was taken back to recovery and she was just starting to wake up. Hannah was a little irritated, but within a few minutes was listening while I read Junie B. Jones to her. We went to the room after just a bit and settled in.

The night was pretty uneventful. Of course her medicines were spaced out far enough that someone was in her room every couple hours - so sleep was not really possible. But other than that, things were fine.
Hannah was able to get out of bed to go to the bathroom, but that was the only times she got out of bed that night. The next morning, a physical therapist came by to get her up and walking more. She protested and didn't want to do it, but once she got started, did pretty well. She walked around the whole floor and then settled back in her bed. Food wise - she was on clear liquids the whole time we were in the hospital. Apple juice, a little sprite, chicken broth, jello. That was pretty much all she ate.

Pain wise, she really wasn't in much pain the first night. She had a morphine pump that she could push when she was hurting. (and it "locked out" for so long after she pushed it so she couldn't accidentally give herself too much). She didn't use most of what she had available. And when she did push it, it was more often because she said her hand was hurting (where the IV was). I did get a mini-lecture when the nurse brought it about how Hannah was the only one who knew how much pain she was in so she was the ONLY one who was allowed to push the button. She kept reapeating it. I promised I wouldn't go push the button! But actually, Hannah would forget about it. She'd cry and say something was hurting and I'd have to remind her she could push the button. She also had a pain pump that attached directly to her incision site in her hip with a small catheter. It just automatically kept pain medicine slowly going to her hip.

The next morning the pain pump was taken away and the pump in her hip was removed as well. She was put on strictly oral pain medicine at that point to get her ready to go home (which she's still on about every 6 hours).

The first night Hannah didn't have much swelling, but by the time we left the next day, she had a good bit of swelling. Now (day 3), she's still pretty swollen, but it may have gone down some. She's also got the beginning of some bruising - also normal.

Food wise, since we've been home yesterday afternoon - she's had mostly liquid, but not just clear liquids. She's had a milkshake and some tomato soup and instant mashed potatoes that are so thin they were liquid, along with some yogurt. Tonight, she can start trying soft, but not liquid things. (eggs, thicker mashed potatoes, macaroni and cheese, soft pancakes, etc.). She'll stay on that diet for 2 weeks. A dietician did come by to give food ideas and talk to us while we were there.

Since we've been home, Hannah's hip is still really sore. Moving from lying to sitting to standing and back is the hardest. Once she's up - she walks around okay. I let her sleep downstairs (started on the couch, ended up on a blow-up mattress) so she wouldn't have to climb the stairs. But she's climbed the stairs twice now anyway on her own. She'll slowly start walking more and more on it and she's supposed to be back to normal in two weeks.

While in the hospital, we were on what seemed like a pediatric heart floor. I think because most of the pediatric patients at UAB are heart patients. But there were 3 girls including Hannah there for the same bone graft surgery. Interestingly, we knew one of them! We didn't know they were going to be there. I was walking down the hall that first night and saw a man I recognized. I couldn't remember his name in that moment but knew I knew him. Sure enough. He and his wife have children also adopted from China through the same agency I used. Their oldest daughter was there for the same surgery as Hannah. The girls didn't actually get to see each other until the next day, but Hannah was interested to know that someone else was there who was going through the same thing she was. The girls' mother stopped by our room for a chat and Hannah bombarded her with questions about her daughter "she's from China like me?, does she have a cleft lip and palate too? is she still bleeding too? (from her nose), is her face swollen too? does her hip hurt too? did they scoop out bone and put it in her mouth?,etc?" We ended up being discharged at the same time and walked out together. Both girls from China in wheelchairs with their faces swollen in similar manners. We were stopped and asked about them being twins and the people who asked found it hard to believe they weren't related at all and weren't from the same family.

Hannah's surgeon was very happy with how her surgery went. Both immediately afterwards and when he came by to see her later that day. The residents who saw her that night and again the next morning all said the same thing. They all said her surgery had gone very well, no suprises, and they expected success. We will go back to see them later next week for a post-op visit.

So for now, Hannah's on the "you have permission to be lazy" summer plan. Watching TV, playing video games, eating ice-cream, and asking for things to be brought to her on on her agenda. And I'm guessing she gets a pass on chores for up to two weeks!

Thursday, June 17, 2010


more later - but we are home. Surgery went well. Hannah was a trooper. She's very glad to be home, even though she is still quite swollen and sore. Her hip is bothering her more than her mouth. She's walking, but she looks like a 90 year old woman! :-) I'll post more sometime this weekend.

Sunday, June 13, 2010

Hannah's Smile

I really love this 6 year old, teeth-missing, fading scar, not quite symmetrical smile! But she may not be smiling quite so brightly for a few days. Hannah will be having her next cleft surgery on Wed (the 16th). This is her bone graft. The surgeon will be taking bone from her hip to place in the cleft of her gumline (which is the only part that still has a hole - the rest of her palate was repaired almost 4 years ago). This will provide bone for her permanent teeth to anchor to when they come in. It's important that this surgery be done *before* her permanent top teeth come in..and well, she's at the age that it's time to do it. (We probably could have waited several months, but being a teacher - I really wanted it done in the summer. Waiting until next summer would have been pushing it). While we're not strangers to surgeries around here, this will be a new experience for us in some ways. It is a different surgeon and a different hospital. Hannah's regular cleft surgeon Dr. Grant (who is wonderful!!) doesn't do this one particular surgery. We still see him yearly, but he refers this one out to an oral surgeon. The particular surgeon we are using (the one who does a lot of these surgeries) doesn't use Children's Hospital, where we've been before. So this will be our first experience at UAB. I was a little concerned that it might be a little less "child-friendly" than Children's and it is definately less familiar to Hannah. But, I have some friends whose children have had experiences at UAB and they said they were very well taken care of and have had very good experiences there.

So, Tuesday we go for our pre-op with the surgeon and to meet the anesthesiologist. Then Wed. is our surgery. I have no idea yet what time. We'll get all our questions answered Tuesday I guess. What I do know is that we will spend 1 night in the hospital. The mouth part of the surgery is really not supposed to be that bad. She'll be swollen and bruised, but it's not supposed to be all that painful. Less than her original palate surgery I've been told, but I don't really know. She will be on a soft diet for a while, but I don't know the specifics of that (how long, how soft, etc.). I do know that her hip will be the more painful site, at least at first. She'll have a pain pump to give med. directly to the site on her hip while we're in the hospital. I expect her to be sore for a while afterwards and activity will be limited for a while, maybe a couple weeks.
So, say a prayer for my sweet Hannah this week. She's handling the anticipation remarkably well. She admits to being a little scared, but overall I think she's doing well. She did ask me in the car this morning if we could "send out invitations" for people to pray for her! love it! Consider this your invitation. :-) I also wrote out a prayer request at church and I was going to put it in the offering basket (which is one way at our church to make prayer requests known - then they e-mail them to people later). But Hannah would have none of that. She wanted to carry the prayer request slip directly to our pastor. Which she did after church. And then she told our pastor she wanted to send "invitations" to everybody so they would pray for her. Our pastor told her if she'd put that request in the basket, they'd e-mail it to the whole church and then it would be like the whole church got an invitation to pray. Hannah smiled really big and told her okay, and dropped it in the basket. I love that she's not shy about asking! Of course, neither of my girls are shy about very much. :-)

Meanwhile, Sadie is being so very sweet to Hannah about the whole thing..telling her not to be scared, she's going to pray for her, she's going to make Hannah a "beautiful card", etc. But, she's also let it be known that she's glad it's Hannah this time and not her! ha ha!! Sadie is really super excited to be spending the night at "nana and granddaddy's house!" rather than the hospital!

Friday, June 11, 2010

No New T-Shirts Club!

The girls and I have formed a club. Because clubs are kind of a cool thing when you're 6 / almost 7. (And when you're 4, whatever is cool to your big sister is cool!) We're calling it the "No New T-Shirts Club!" It's a very very small step to simply life. I've been reading a book called Simple Life. It's about simplifying life in regards to time, relationships, money, and God. Good book. But it's had me thinking. My girls are very very blessed with clothes. They have been given hand-me-downs galore. And of course, grandma likes to treat the girls to new dresses from time to time. Our closets runneth over! Literally. And they have such variety..summer, winter, spring, fall, dressy, casual, school, play, "fancy" (Hannah's favorite!) I almost never need to buy them new clothes other than underwear and socks, and sometimes shoes for Hannah. Oh, and she needed a couple pairs of jeans this past year for the first time. When they outgrow a set of clothes, we have a set in the next larger size waiting to unpack. And they like it. They are thrilled with their "new" old clothes each time it happens. Sometimes, we come home from church or school or something with a bag of clothes from a friend. The first question asked (with eager anticipation) is "is it mine?". They both are hoping it's clothes for them. And *just* when I think..uh oh..I'm going to have to go buy Hannah some new clothes, this is her last size of hand-me-downs, well, someone blesses us with a set of clothes in the next larger size. It's amazing really. God is truly clothing my children every year. (Makes me think of the passage in the Bible about seeing how God dresses the lillies of the much more he meets our needs). So, the point is, my children do not need new clothes. They are not in any danger of not having something to wear. But I'm wondering how many parents have noticed how many oranizations / actitivites / schools / even churches sell t-shirts for everything!! There's the school t-shirt, the field trip t-shirt (sometimes same as school but not always), the dance recital t-shirt (not that they wear it in the recital - just that they purchase it to wear after the recital), the field day t-shirt, the baton t-shirt, the vacation bible school t-shirt, and more. And I? usually buy the t-shirt. Because I don't spend money on new clothes so I can't say "it's too expensive". Because I don't want my kid to be the one without the t-shirt. Because everyone gets it. And you know, those arguments don't hold water with me for most things. But I usually give in and buy the t-shirt. And my girls really don't care about t-shirts. They don't. And a confession? Sometimes I have to actually MAKE my girls wear the t-shirt we bought for said occassion. Like tonight, Hannah did not want to wear her VBS t-shirt for the VBS celebration! She wanted a "fancier shirt". But I made her wear the VBS shirt - because I bought it.

So, we are done with new t-shirts. Mostly. Of course, some come free with participation in a certain event. If my child is handed a t-shirt, fine. But we will not blindly buy t-shirts for activities any more. By the way, this is not just about my kids. Even as an adult, it seems that some group is trying to sell me a t-shirt at least 2-3 times a year. And there's nothing wrong with that. If you buy a t-shirt to support a group you are connected with - great. And there are a few times I could forsee we *might* consider buying a shirt. But we're going to think long and hard first. And if there's not a compelling reason to do it, we're not going to do it. When Sadie starts kindergarten (not this year, but next)- I will buy her the kindergarten field trip t-shirt. Because it's a safety issue. I want the teachers to be able to glance around and know "yep, she's with us" when they're all at the pumpkin patch. So sometimes, there is a good reason. I've realized that I don't really support a group when I buy a shirt from them. Not really. Most sell the shirts cheap enough that they are not making a profit. The t-shirt company gets the profit. So it's not a fundraiser opportunity for an organization (generally with us..I realize that's not always true). Sure, we show our support by wearing the shirt..or team spirit..or whatever. And there's nothing wrong with that. But like I said, we're going to think long and hard first. We don't need t-shirts for everything we're involved in.

So - we started the "No New T-Shirt Club". But maybe we'll change the name to something else if we think of a good title. Basically, any time we choose NOT to purchase a t-shirt that an organization is selling, we're going to put a construction paper cut-out of a t-shirt on the wall in the kitchen. Then, next summer, we're going to count how many t-shirts we *didn't* buy. (I'm predicting 10 total: 5 for Hannah, 3 for me, 2 for Sadie..but we'll see. And we're not actually involved in that many activities!). Then, we're going to go buy new shirts for children who *do* need them in our community. Because there are children right in our own community that would find having 10 new t-shirts very very special. Kids that need them. So, that's our plan in the "No New T-Shirt Club". A very very small way to simplify our own lives by not buying what we don't need and a very very small way to help my kids learn to give to others.

In case you're curious about my kids' reaction to this idea: one of them thought it was great. The other had some hesitation..and I told her she didn't have to do it, but that I was going to do it and would love to have her join me. I told her I could not / would not buy a t-shirt for everything she was involved in, but if there was one or two special ones during the year..we could think about it and decide then. She informed me this morning "I don't even wear most of those t-shirts. I want to be in the club and help kids who need clothes, because we have enough clothes".

So, if anyone would like to join us - let me know! My children would love to have some more members in their "club". (And we don't even charge dues or have meetings!)

Open for All

I just changed the setting on my blog that allows anyone to read without logging in. I'm not sure how long I'll leave it this way. But I'm not sure who really reads this much anymore anyway. For reasons that make sense in my head but that I don't know if I can articulate yet, I decided to experiment with making the blog public again. If you were a reader while it was private, your information is saved on the readers list. If I move back to private in the future (which I'll post and inform everyone first), those who were already listed as readers will still be able to login and read. Anyone else will need to be added by me.

Tuesday, June 01, 2010

Catching up? Or Maybe Not!!

6 Months!! I can't believe I haven't written anything for 6 months. But now it's summer and I'd like to get back to writing. Only, so much has happened in the last 6 months there is no way I can "catch up". So, I'm not going to even try. But here's just rundown of the girls. And then, I'm going to try to move on and post things that are current more often. Try. :-)

Sadie is doing great! She's done with surgeries (at least for now..there's the possibility of 1 more when she's a good bit older, but maybe not). She's wearing a splint only at night and has been for quite some time. We haven't even been to the OT in probably 3 months or more. We will visit the OT at least once this summer. And probably an opthamologist to have her vision rechecked. But that's all for her. The last time we saw her hand doctor in Atlanta was March. We don't go back until September. 7 months without driving to Atlanta! It's been wonderful!! (though we do love Dr. P and his amazing staff!)

Sadie is doing wonderful developmentally. She's been receiving speech services through our school system for the past year and while she does have some language "quirks"..her speech has really come so far. She talks NONSTOP! I mean that literally - she never ever stops until she goes to sleep. (To her future teachers: I'm sorry. But it's true.) And she doesn't meet a stranger. ever. She's engaging and friendly and precious and people are just attracted to her personality. Just do me a favor. If you see us in the grocery store and you don't actually know her (or she doesn't know you!), please don't try to hug her. We've been working hard on her hugging people she knows only. Sadie played soccer this spring and loved it. Well, she loved the fun little games they played at practice. At the games, she loved socializing with "ALL MY FRIENDS!". She did score one goal in a game - it was for the wrong team..but hey, in 3 & 4 year old soccer, it just doesn't matter. She did a victory dance and everyone cheered for her regardless. Sadie celebrated her 2nd "Family Forever Day" in early May. Hard to believe it's been 2 years. She is the perfect fit to our family. Her wish list for the summer (we wrote them down tonight) includes playing in the sprinkler, putting a cup of water under her shirt and dumping it on herself, making a hat for her stuffed Mickey Mouse, tickling mommy, and blowing bubbles.

Also good. She's had a break of all things medical until recently. We've gone back and forth with hearing tests, ENT visits, and audiology visits this spring. Hannah had her tubes removed at the end of January. And has had a couple ear infections since then. She's failed hearing screenings and tested with a mild hearing loss. But she still has holes in her eardrums from the tube removal (they'd been in 3 years so it was a risk). We just went back to the ENT today and the holes are still there. Her ENT wants to surgically close them but thinks we might want to wait a bit first. The holes act like a natural tube and prevent fluid build up. And Hannah has another surgery coming up this summer so we're putting the ear surgery on hold until probably next spring. The only downside of that is it means she will continue to have a mild hearing loss for most of her 2nd grade year, just as she did for her 1st grade year. It's mild, and didn't seem to effect her academically, but it's something we'll be watching closely. She has a harder time in noisy environments particularly.
Hannah had 3 teeth pulled by her oral surgeon about 2 months ago. She racked up with the tooth fairy for 3 teeth since she was so brave! The teeth were pulled so they'd have time to heal before her did surgery in that area of her mouth this summer. Actually, in about 2 weeks. Hannah will have her bone graft surgery to repair the hole in her gumliine left from her cleft. They will be taking bone from her hip and packing it in her gumline where there currently is no bone. This will give her permanent teeth a place to anchor to when they come in. She'll be on a soft diet again for a while (not sure exactly how long, but after her regular palate repair it was a month!). She'll also have some activity restrictions for a couple weeks.

Hannah just finished 1st grade and she had a wonderful year. She's reading like crazy and one of her favorite things to do is have me give her math problems to solve in the car. She was also just dismissed from speech. We had a "graduation from speech" celebration and she was quite proud of herself. She should be. She's worked hard and done beautifully. To go from absolutely no speech and language at 3 years old to where she is now at not-quite 7 is amazing. Of course, she's had some great help with her wonderful therapists! She has a few little "quirks" left, but they are so minor that we just address them as they come up and move on. And I've realized - many 6 year olds have a few little language "quirks" anyway. Hannah's extracurricular activity of the year was Girl Scouts. She was a Daisy Scout and she had a blast. Her favorite thing was Daisy Camp this spring (just for the day - they won't spend the night until next year as Brownies). She tried her hand at canoeing and archery. She was pretty good at the archery and she loved every minute of it! She's also made some great friends through her troop this year. I limited Hannah to one activity outside of school (other than church) this year because 1st grade was enough of a jump for her with no nap and homework, etc. It was definately the right decision for us. We're going to have to do some discussion and compromising on 2nd grade I think. Hannah has informed me that next year she wants to do Brownies, dance again (she used to be in dance and took the year off), play basketball, and be a football cheerleader. Oh, and she wants to do baton too. I'm glad she has many interests, but it's too much for me and it will be too much for her. She needs "down time" to just play. And we all need down time to just be together and do things as a family. That time is sometimes hard to come by during the school year. So, we'll be hashing all that out this summer to come up with one or two activities. Hannah celebrated her 4th "Family Forever Day" just a few days ago. 4 years ago I became a mom for the first time..I can't imagine living a life different from the one I live now. Hannah's wish list for the summer included: dumping buckets of water on each other, bubbles, the park, making a hat and a crown, riding her bike, painting all over her whole body (we did that a couple summers ago), going to grandma's house, and fishing.

Ah, summer! I love summer!!

(okay - was going to go back and add some photos..blogger is being crazy. Maybe they'll get added later. But I'm going to post anyway)