Sunday, September 30, 2007

A nice weekend

This weekend we had some company! We had Cainan's first real visitors, and it was nice. Mat's sister Teen and her husband, Frank came and visited us for the weekend. It was nice to have them here. We had a nice weekend visiting and Teen and Frank were glad they had a chance to meet Cainan. It was a nice little break as well - someone else to play with the kids! HA! Teen and Frank came in on Saturday early afternoon and stayed until Sunday early afternoon. The kids behaved well and we all had a great time.
Finley is feeling slightly better. She still has a very congested cough and runny nose, but the laryngitis is pretty much so gone. No fever either all weekend. So she will be returning to school tomorrow. I know that coughs tend to linger the longest, so I think she is well enough to go to school. She had a pretty good day today. She still isn't eating great, but doing pretty well. I know she is getting some molars as well, so I know that isn't helping and contributing to her grouchiness.
Mat has left on a short business trip tonight. He will be in Conneticut until Tuesday. My parents are coming in for a visit starting tomorrow, so it will be nice to have their company. This is a busy week for us, so it will be great to have the extra hands. Plus, it will be nice to have someone else to play with the kids! Arlington is so excited that her grandparents are coming. That made saying goodbye to her daddy for a few days a little easier.
You will be proud of me - without Mat here tonight I managed to get all the kids fed, and kept happy, and bathed and put to bed by 8pm! And everyone did really well! No one put up too much of a fight. Now I am relaxing and ready to crash myself.
We took some pictures this weekend from our visitors, so enjoy! Tomorrow starts another busy week for us!

Friday, September 28, 2007

A new doctor for Cainan

Today Cainan met with the eye doctor. I don't know if any of you remember, but when we first saw pictures of Cainan, then Cainan himself, we thought his one eye looked to be a little lazy, and cross to the middle of his face often. So we wanted to get it checked out to make sure he was seeing okay. The eye doctor appointment was interesting! I have never taken a small child to an eye doctor before and was curious how they would perform a test on a little one. This was no easy feat! They had him look at a series of cards and focus on the different black and white lines. Each card had these lines and each card had different widths of the lines. It made my eyes hurt! But Cainan just had to look at them. After a few cards he grew tired of this game and wouldn't look at them any more. We tried to get his attention, but he just closed his eyes! Little stinker. But they told me they got him to look at each card. He did have to have his eyes dialated, and then she looked in his eyes. She distracted him with some light motion toys so that he would look straight ahead, and that seemed to keep him occupied. He didn't like getting his eyes dilated, but while we waited for the medicine to work, they had a playroom, so that helped. In the end, the doctor discovered that Cainan didn't have a crossed eye - that he just seemed to have a lot of extra skin around his nose and eyes, and once he grows into his face, the eye will look straight. But she did discover that he does have nearsightedness and astigmatism. I knew I shouldn't have gone there! Now he needs glasses! :) Great. Poor Cainan. I can't believe they would put glasses on a baby, but I guess they do! They aren't going to be cute either! I am sure they will have to wrap around his head so they stay on.
Now his nearsightedness we are told is pretty common in Asian people. I guess most Caucasian people are born far sighted, and then move to 20/20, and then to nearsightedness. Asians tend to start at 20/20 or nearsightedness and have worse sight earlier on! But if we would have never taken him to the doctor, it might have been years before we realized that he couldn't see well. He seems to see just fine. We are thinking we will wait on the glasses probably until the new year. Mostly because of 2 things: 1 - he has been through enough. 2 - he is wearing a helmet. I don't think he will be able to get the glasses on under that helmet. He doesn't need any more trouble with his head, and since he is little and not driving or reading (ha) he will be fine a few more months. But we have the prescription. Sigh.
The helmet is back on today. His head is cleared up nicely, and it is time to get back to wearing it. He took it in stride going back on. I am sure the heat rash will return, but this time we are keeping him in his diaper from the get go, to help keep it from getting so bad. And now that he is on the other side of the surgery, his face won't be swollen so he shouldn't get the breakdown of the skin. (We hope!)
Arlington said something funny that I wanted to share. Cainan got some balloons while he was in the hospital (thanks to gramma and Pappy Pletcher) and Arlington wanted me to tie one to her wrist when we got home. She grew tired of it after awhile and wanted it off. The knot had gotten pretty tight, so I said to her "I may have to cut it off". She looked at me and said, "cut off my hand?" (she was being very serious). I laughed and explained that I was going to cut off the balloon string. I asked her, "what would you do without your hand?" And she said - in the strictest 4 year old seriousness "I guess I would have to get a hook". She is too funny!
Finley is still very sick. The laryngitis is better today, but she has a terrible cough and runny nose. And she is hardly sleeping. She was up just about every hour last night and today only took a little nap. She is very cranky. We also know she is getting some molars, so that isn't helping. We are trying to keep her pain down, but she is still very sad. She isn't eating much. She won't eat anything hard or hot. So she is mostly drinking, and eating yogurt and fruit. We are satisfied with the amount of food she is eating. I hope she feels better soon. I really feel for her. Basically since she started daycare 2 months ago she has been nothing but sick. Arlington was the same way when she started, but it is hard to watch your kid go through it.
Here are just a few pictures from today!

Thursday, September 27, 2007

Home at last

We arrived home from the hospital this evening! We were released around 4pm, but by the time we got all the paperwork done and prescriptions filled we weren't on the road until 5pm. We got home around 6:30 and Cainan couldn't have been happier to see his toys. He didn't even want to eat dinner! After some playing and interacting with the girls, everyone went to bed by 8pm. Finley, who is still not feeling well was the first asleep - probably closer to 7:30pm for her! She just seems to get worse as the day wears on. She only ate about 4 pieces of peach for dinner, and didn't want anything to drink. She is drooling like crazy. Her throat must really be hurting. She had been eating and drinking better earlier in the day, but come the evening I think her throat is the most sore, so she doesn't want to swallow much. We will keep an eye on her and if she isn't better in a day or two, we will return to the doctor.
Anyway, Cainan was released with still the gauze in his nose. We have to change it three times a day. We have a doctor's appointment next Tuesday, so I hope that will be when we can be done with the gauze. They are having us do a "wet to dry" dressing, where we wet the gauze, and stick it in his nose. Not very far - he doesn't even complain. This helps debride (clean) the wound and get rid of the infection and help good tissue regrow. The doctor thought it looked good this afternoon, so I hope we are on our way to healing. We can put vasaline on his lips (which are a little dry) but don't pick the skin off (no way are we touching those remaining stitches!). He is looking much better. His wound looks good, the swelling has gone down. His skin is clearing up. I even think we will put his helmet back on tomorrow, so that we can continue with fixing his flat head. Things are looking up.
Cainan was supposed to start school next week, but he may not be able to. The doctor told us that it would be two weeks (from his surgery date this past Monday) until we are out of the woods with his lip. That being the case, we have to leave the arm restraints on and feed him all his meals. His daycare isn't going to do that, so he will have to stay home unless next Tuesday the doctor gives us other instructions. Also, if he has to keep the gauze in his nose any longer than next week, we would have to keep him home anyway. It hangs out a little and I can see little dirty hands touching his face constantly! Plus, he has a 14 day course of this "super antibiotic" ahead of him, so we want to keep him from getting sick if we can! And with all the sickness Finley is getting, we know Cainan will be getting that too! So intead of starting school on the 3rd, he probably won't start until the 10th. Oh well. He will get there and be there soon enough - what is one more week!
The 10th of October is also my first day of work back from my leave! I can't believe by then I will have been home with Cainan for 6 weeks! It went by so fast, we have been so busy! But I am looking forward to going back and seeing my patients and my co-workers. I am looking forward to getting back to a little "normalcy" whatever that may be!
Thank you to everyone who sent prayers, thoughts, and good wishes. It all worked and we are home tonight as a family once again. We know many of you (especially our new friends from China) have much harder roads ahead of you than we did (weeks of hospital stays instead of days) and know that our prayers and thoughts will be with you. We are so lucky to have wonderful friends and family who look out for us and help us through out tough times. Know all of you mean the world to us!
Tomorrow - pictures will return - I promise!

Wednesday, September 26, 2007

Still in the hospital but coming home soon

Mat is staying the night at the hospital, so I am updating the blog. Cainan is spending what we hope is his last night in the hospital. Here is what is going on:
Tuesday we moved from the ICU to the regular floor. I didn't even have to argue! I didn't want to stay in the ICU if we didn't have to. So we got moved and he just has to monitor his oxygen level and pulse while he is asleep - no biggie. One little monitor, so that is much better. He is in a double room, but all day and night Tuesday we didn't have a roommate, so that was nice. We had the whole room to ourselves. The rooms at Joe Dimaggio are really big and spacious, so there is a good bit of room between each bed in the room. A lot of room to spread out. It is almost like being in a single room. Mat had spent Monday night with Cainan and when I got there after dropping the girls off at school, the doctor had already been in. Dr. Stelnicki was just waiting to hear what the infectious disease team had come up with, but agreed to move Cainan. He figured he would spend probably until Wed. in the hospital, so he should be more comfortable on a regular floor. After Mat left, at lunch time we packed up and moved to our other room. Cainan took a good nap, and during that time the infectious disease doctor came by. He was working on Cainan's sample, and they had put him on even a larger antibiotic to help kill what was going on. The infectious diseases doctor felt he had the right combination of antibiotics through his IV now that would treat the infection. Now the trick was finding one that was oral that we could go home on. He knew so far that Cainan has a strep infection in his nose and one form of E. Coli. But there seemed to be other bugs that he hadn't found an oral antibiotic that would kill yet. So we would be staying until that happened. So we settled in!
Now that we are on the regular floor we could go to the playroom which is HUGE! It is really nice and has many different rooms. There is a room with toys and art. A room to watch movies and relax and read (and the older kids to do homework), a room with a lot of tables and computers, a little kitchen where every day they serve free breakfast and lunch for the families staying on the floor (yummy too!), and then a relaxation room with massage chairs! Very nice. Cainan and I spent time in the playroom and that broke up the boredom for both of us. He was in better spirits since we were able to walk around.
At about 2pm on Tuesday I got a call from the girls daycare. Finley is sick with a fever and needs to be picked up. Wonderful! Of course she does! When it rains, it pours, right? So Mat, being home for maybe an hour, had to go and pick her up. We took her to the doctor and she just has a virus - again. She has laryngitis and a bad cough and runny nose. She doesn't really want to eat because her throat hurts.
This morning: Dr. Stelnicki (our surgeon) greeted us at 8am with the news that they still had not found a drug to stop the growth in Cainan's nose (oral - we were good IV wise). So we would be staying until it was found and then 24 hours after that. So we are definitely in the hospital until Thursday. Dr. Stelnicki removed the packing in Cainan's nose and said it looked really good. Then he gave me more bad news (of sorts) - Cainan had managed to chew out his stitches - again. He must be doing it in his sleep because I never take my eyes off him while he is awake! The doctor felt the site was healed and would probably be fine, but that only time will tell. If in two weeks from now the site is still closed, we are out of the woods. Sigh. What are we going to do with that boy????? Please pray his lip does not get bumped or come undone again. We can't afford more bad news.
Then finally some good news. The infectious disease doctor came by in the late morning with the exciting news that they had found the antibiotic that would kill all 4 bugs that Cainan has in his nose (yes, 4). He has strep, influenza, and two forms of E. Coli. The kicker is the one E. Coli - he brought with him from China. The doctor explained that he probably picked it up in the orphanage, and it is prevalent in China, and the US is just starting to do work on it. He was glad he was able to find a drug resistant to it - pretty proud of himself! We were so glad as well. Unless something else happens - this means we are going home on Thursday. Infectious disease also assured us that once the antibiotics attack this E. Coli it will disappear from his system and be gone for good. More good news! Also, he is convinced that Cainan's rash is contact dermatitis and that with hydrocortisone cream on it for 10 days, it should disappear. This guy is really good and very nice. He even gave us his business card that if we ever needed him in the future to call him. He has been the most excited person about Cainan and us adopting him. Thinks that is just the best thing!
So since we were staying another night, Mat took my place at the hospital so that I could come home to get more clothes. I should have known and packed more, but it is a nice break. Sleeping at the hospital is not that great and I am tired. By us sharing the time there, it doesn't make it so bad.
So that is our sad story! :) Cainan is doing really well. Just slightly grumpy and mostly because he is bored. Mostly he is happy. He is on a full liquid diet now which means pediasure, ice cream and pudding for him! Who wouldn't love that?
Sorry -no pictures. I promise there will be more soon!
Oh, by the way, here are the funny things people have said to me about Cainan while we are in the hospital.
"Is his dad oriental?"
"He got your skin color" (I have olive skin from my Italian background)
"He looks like you"
Most people have picked up that he is adopted and want to hear all about it or share their own story. It is fun.

Monday, September 24, 2007

Surgery didn't go as expected

Well, I am posting tonight but not because Cainan didn't have to stay in the hospital. Mat decided to stay tonight. I am glad because I am really tired from being up since 4am. The good news - Cainan's lip is fully back together. The doctor wasn't sure at first if he could close it completely, but he was able to. And it looks really good. Let's hope it sticks this time. The bad news - he had an infection in there! Don't know how that happened. Most of the infection was in his nose. He hasn't been running a fever, we haven't seen any pussy drainange - no indication that it was infected. But when the doctor was in there, it was badly infected. Hmmm. Ugh. So when the doctor came out of surgery he explained that he needed to open the nose up a little so it wouldn't be perfect for now. And he is right - it is flatter than it was. But he assured me that he will correct that this spring. He needed to open the nose up some because he had to pack it since it was infected. Fun, fun! So now his nose and palate are full of gauze. We are all baffled. The doctor thinks maybe the first antibiotic Cainan was somehow resistant to it. The doctor has infection diseases involved to make sure they get the right antibiotics this time. He is on triple antibiotics - three biggies. We met with the infectious disease doctor and he said that the cultures he saw where not that bad. But they need to let them grow over the next 24-48 hours to see exactly what they are dealing with. Right now they are just hitting the infection as strong as possible and hoping it works. If not, they will have to reopen the whole lip, let the infection out, have that heal, and close the lip at another time. Let's hope it doesn't come to that! I can't imagine starting completely over. That would be so unfair to Cainan. We are hoping for the best and good news from the infection disease doctor tomorrow.
So he is in the ICU again. I want to get him moved out of there tomorrow, so I hope I am successful. We are looking at a 2 night minimum stay - possibly three. They want to give him all IV antibiotics and hit it strong. I can't tell you how disappointed I was when the doctor told me we would be staying for a few days. The hospital about drives you into madness with boredom - especially in the ICU. If we get moved to a regular room, we will at least have a playroom we can take him to.
So I am taking the girls to school tomorrow and then going back down so that Mat can come home and go to work. I will stay all day tomorrow and all night, and only if he has to stay yet another night will Mat come back down.
So that is our news. The lip is all sewn, the nose is undone slightly, packing is in. Oh, the nose plugs are out - so nice!!! He is breathing nicely through his nose now. Whoo hoo! He has got to be loving that! And they took out the sutures over the skin that was healed and cleaned it up, so the area between his nose and his lip is really looking nice. If I remember to take the camera, I will take a picture tomorrow.
So there won't be an update on the blog tomorrow, but I will update everyone once we get home from the hospital.
Thank you for all of your thoughts and prayers. They mean the world to us!

Sunday, September 23, 2007

Day before surgery in Steeler Country

Well we might not be IN Steeler country, but on Sundays in the fall it is all about Steelers football in our house! We want to start by saying that the Steelers will always be the best football team there is and we are proud of their win today! Whoo hoo!
Tomorrow is Cainan's surgery. We are leaving here at 4:45am to be there by 6am. Fun fun! I am allowed to give Cainan liquids up until 5am, so I am waking the poor boy at 4:30 to give him a cup of juice before we go. His full belly will thank me and forgive me for the ungodly hour to eat.
If you do not hear from us on the blog tomorrow, then know that we had to spend the night and I will report in on Tuesday. But we are hoping we don't have to. I don't think I will know until the surgery is actually over and they see the extent of the damage. Our little active boy bumped his mouth again today while attempting to sit down while he was standing between my knees. So that split his lip even further. Very, very frustrating. It bleed badly again, and he cried pretty hard. this is getting nuts. I am telling you - for the next week, I am going to have to corral that boy so that he can't get hurt! I wish there was a way to protect our active little toddler from bumping his mouth. Just like any child - his actions are unpredictable! Hopefully this will be the one and only fix.
A pretty uneventful day besides that one episode. He has been in good spirits. Walking and walking and walking all over the place. Finley, Arlington and I went to church this morning while Mat stayed home with Cainan. Until his lip is better, Mat and I take turns on Sunday going to church with the girls. Mat got all the stuff he needs to finish Cainan's room - yeah! Once I get some stencil brushes, we will be finishing up the design in his room. I am glad.
Arlington did a lot of art work today. The 21st was her Aunt Tricia's birthday - Aunt Tricia know that pictures are coming your way. I told Arlington that Aunt Tricia could put the pictures in her classroom and school and Arlington asked, "does she live there?" I am sure Aunt Tricia feels like she does!
Here are just a few pictures.

Saturday, September 22, 2007

A new day

Today has been a fun day. The kids have been really good today, and we have had a lot of fun. It has been raining here for most of the day, but we have found a lot of indoor activities to pass our time.
Arlington learned how to "fool you". She wanted to know what it meant, so now she says, "look at the plane upside down in the tree!" Our response has to be "where?" And she says, "I fooled you". So silly, and never ending!
Finley is cute as always. She has been mostly playing in a plastic bin today. We have been cleaning up the toys and getting rid of things they kids no longer play with, and everything I put in the bin, she takes out. She is a goof. And, of course, she thinks she is hilarious.
Cainan, well he said his first word! At least we are counting it as his first word. Today he said "uh oh"!! We were so excited. He repeated us, and that was nice to hear. He is also working on saying "ma" and "moo". He is working on making an "m" sound with his new lips. He is getting there. Can't count it yet!
The sad news of the day - Cainan looks like his nose is also starting to change shape. It looks like some of his stitches have let go around his nose and his nose is losing its shape and starting to slide down and become crooked. Great. Good thing we are going for a revision. Who knows why he is having this trouble post op. Maybe because he had a large gap and that was hard work for the stitches. Maybe he rubs his face at night in bed. Who knows. but it is happening and today it is worse. Even his mouth looks like the gap got a little bigger. One more day and then we head back top surgery. Hopefully this will be the one and only revision. He just starting to get back to himself and we are going to have to start over.
Here are some pictures from today.

Friday, September 21, 2007

Sigh - three steps forward, two steps back

Okay - I am REALLY, REALLY trying to stay positive, but it is getting hard. Today has been another hard day for poor Cainan. Although, let me start with the positive stuff. He did better with eating today. He seems to like the "Wheels on the Bus" song, so when I sing that while I am shoving food in his mouth, he is pretty quiet. Today went better. AND he got to sit in the highchair and eat fruit (soft pieces of peaches). I thought he was going to jump into that highchair. He was so excited to sit there! He kept signing "more, more" when I was feeding him. I know he just wants to get back to a normal kid diet. Baby food can't taste that good! Plus it is not fattening so he has to drink 3 cans of pediasure a day - huge challenge! He loves it, but 3 cans is a lot for anyone his size. (8 ounces each) We are coming to a truce on the food - a least for today.
Anyway, the ear nose and throat doctor checked his ears today (1 week post surgery) and said all looked great! We don't have to see her again for 3 months. Yeah - another positive! She was so impressed with his nose surgery as well. The whole office was checking him out while we were there (last time they saw him he still had his huge hole) They were all impressed. Cainan was eating up the attention giving lots of smiles and waves.
We only had 1/2 hour to relax after that appointment before we were off to have his helmet adjusted. While I had him on the floor, I took off his helmet and noticed significant breakdown on his head at one place. Ugh. I had to take his helmet off until the helmet adjuster could look at it. Breakdown - no good. Plus he still has some redness in spots on his head and I wanted her to see that as well. And then the worst thing - while I was wiping his face, I got a good look inside his mouth. I was looking at his lip and I saw.......yep, it was SPLIT!! The other day, when he bit his lip, he must have loosened his sutures. Now he has a huge split inside his mouth where his lips should be attached. Good thing I was going to the craniofacial office. (The helmet and cleft stuff comes from the same office). So when we got there, the lip started to bleed. Again. So they took him back and the physician's assistant looked at it, and declared he had indeed split his lip. She immediately called the surgeon, and we got the bleeding stopped. After speaking to the surgeon (who was across the street in surgery) he said that the lip would have to be redone. I about lost it. I knew that was going to be the answer, but we were going to have ANOTHER surgery. I asked if they thought it was extensive, and she said that from what she could tell (the PA) it didn't look like it involved the muscle, which was a good sign. But they wouldn't know until they got in there. If it involves the muscle, we will have to spend the night in the hospital. If not, we can go home after the surgery. Monday is our surgery day. We have to go in at 6am. No idea what time we will actually be operated on, but at least we should be one of the first cases. So back we go. I am going alone - Mat will take the girls to school. If it ends up that we have to spend the night, Mat will stay this time. (probably as long as I feel the nursing staff is adequate). Please pray he did minimal damage and we can go home after a few stitches. He will have to be on a liquid diet for an extra week and won't have the sutures removed until the 2nd of October. Poor little guy. He is going to FREAK.
And then the helmet. The helmet adjuster was sad about his breakdown, but she said it is common for kids who sleep on night and don't move around much - especially in the beginning of the wear. So she said we have to leave the helmet off until the wound is heals and ALL the redness on his head disappears. She said it could take a few days to a week. We could lose all the progress we have made so far, which will REALLY stink. His head was actually looking a little better already. I know Cainan is happy to have a little break from his helmet, but this just means he will have to wear it longer in the end.
So our three steps forward were the helmet, the tubes placed in his ears and the cleft surgery. The two steps back were the helmet and the surgery. I know this is all temporary and will soon be a distant memory, but I am tired and discouraged. I look at our poor boy with a red head, a crusty upper lip, tubes in his nose, arm braces on, and a heat rash over his whole body and think - what is going on here? Bu when he smiles, and takes it in stride, I realize that is what I need to do as well.
I look at our calendar which is filled for every day, and feel extremely overwhelmed. I think for once I need to stop looking at the big pictures (the whole calendar) and take it one day at a time - one appointment at a time.
Thanks to everyone for the words of encouragement and for all the insurance advice. It was all very helpful and uplifting! For those of you who know me well know I won't stop fighting until I get what I want. :)
Here are just a few little pictures

Arlington playing peacefully in the playroom. The babies were upstairs and she was not bothered!
Hello there - fell bad for me still. At least you can see my head today!
I never stop moving .long enough to get my picture taken. Plus - I love milk

Thursday, September 20, 2007

A busy day and insurance woes

Today we stayed busy all day and I didn't have time to take a single picture! (sad) I just didn't get a chance. Cainan had a much better night last night. He only woke up once around 2am, and was fussing, so I decided to give him some Tylenol, and then I didn't hear from him again until 6:15. So we were pleased. And his disposition was 100% improved today due to getting enough sleep. He still fell asleep in the car when we went to get Arlington from pre-K, and took a 2 1/2 hour nap this afternoon. He is still catching up! We saw more smiles from him today, which was nice. We are still "meanies" when it comes to eating, though. He just doesn't want to sit and be fed! It is a real struggle, and he cries so hard, and fights and fights. But he must eat, so we have to hold him. It is awful. And he sweats so bad when he cries - that isn't helping his heat rash! He only wants to take a few sips of his drink and a few bites of his food, and then be off and running. Then 10 minutes later he is hungry again! We don't play that game in our house. We are firm believers in eating all of your meal at a sitting, and then going to play. It is what we taught our other two, and Cainan will learn the same. We don't "snack eat". We have meals, and then snacks! :) So it is struggle for him. He was doing SO WELL before the surgery. We are hoping that once next week comes and he is back to his regular diet and feeding himself, he will be happier about the mealtimes.
Otherwise, his day was better. He is now walking all over the place. He is really amazing! And his crawl has perfected. We are so pleased with his progress.
The one down side to today - INSURANCE COMPANY. I got a call from the center that is going to do Cainan's therapy. (which he starts next week). They told me that when they spoke to the insurance company, the insurance company told them that since Cainan's problems weren't due to illness or injury, he wouldn't be covered. That includes SPEECH THERAPY. Huh????? I was just told three weeks ago that it WOULD be covered. So I called the insurance company and got into a heated discussion about Cainan's cleft lip and palate and how could they NOT cover Speech for such a disability. I have a 15 month old that doesn't speak a word, and he doesn't qualify? Are they serious? But they held their ground. "It is a birth defect, not an illness or injury, so we won't cover it." So wonderful. I know for a fact that Florida has a LAW that says insurance companies MUST cover speech therapy for cleft lip and palate kids and can't deny it. I called the head of the human resources department of Mat's job to discuss this with her. Here comes the BEST part. Mat's insurance that his company purchased is SO CHEAP that they got written under a federal law clause that protects them from having to follow state laws. We were told that this keeps the insurance coverage down for THEM - not Mat neccesarily - the COMPANY. I commented on how unbelieveable that is that my son can't get what he needs due to them being so cheap. That it is completely ridiculous. Mat is furious. We are probably going to have to pay out of pocket, and it can be very expensive. But he MUST, MUST, MUST have speech. We were told to submit everything we can from the pediatrician and the cranialfacial specialist to the insurance company and they might cover it. But not to hold our breath. Wow, if we can't get speech, who can?
Anyway, I am done rambling. I am just trying to do right by Cainan. Another reason to hate FLORIDA!!!!!!!!!!

Wednesday, September 19, 2007

A stressful day

Well today has been interesting. It started by Cainan crying every hour last night due to who knows what. He was only awake for a few minutes each time but woke us up each time he cried out. Who knows why - maybe his face brushed the mattress and that hurt. Maybe he didn't feel like sleeping. Whatever the reason - it was a long night. And then around 5am this morning, he decided he was done sleeping for good, and cried/talked until 6am when we just got him up. Luckily our girls are sound sleepers and he didn't bother either of them.
So from minute one today, he has done nothing but whine and cry. He is TIRED! Not much we can do about that. I do feel bad for him. I am sure it is hard to sleep with his lip healing, those things in his nose, the arm restraints and the helmet. We kept him us as long as we could today. We didn't want him staying up all night if we could help it. It was hard for him, but he made it until about 11:15 and then couldn't stay up any more.
BUT before he fell asleep, he was walking around playing, and actually acting happy WHEN he turned around and looked at me and his mouth was full of blood! I couldn't figure out what had happened since he was just walking around, so I grabbed him and started putting pressure on his mouth. I never heard him cry so much. I felt bad and was trying to be as gentle as I could, but it was bleeding really badly, and looked to be coming right from his suture area. I thought he might have bitten the sutures and knocked a few loose. I called the doctor's office and they wanted to see him. I also called Mat because I didn't want to go alone. I am always the meany. So he came home from work and we drove the 1 1/2 hours down to the office. The doctor saw us, and looked at his sutures and said they seemed to be fine, and then noticed that he had bitten his lip right next to the suture line. We were so relieved! The doctor was happy that we brought him in to be checked, and we were glad to be leaving without having to get more sutures.
Cainan had napped down to the appointment and back from the appointment, and was feeling a little better by then, and had a pretty good afternoon. He cried off and on, but was a little more distracted with his sisters here to play with him. He mostly only cried when we forced him to eat. He just gets a little worse in that department everyday. He doesn't like most of the baby food (who can blame him) and cries getting his milk if he has to sit still more than a minute or two. Sigh. But he has to eat, and since the liquids don't keep him hungry for long, he has to eat often.
Anyway, the girls are doing great! Both went to school today. Arlington, our genius (who we know will someday go to Harvard on a full scholarship!) has trouble remembering anything that she did at school besides playing on the playground. She is too cute. She thinks it is only important to tell me about her playtime and not what she learned. I think school might be a little boring for her right now because they are working on things she already knows how to do. But she doesn't complain. I just think she doesn't think it is very exciting, and not worth reporting at the end of the day!
Finley continues to be our little weirdo. She is learning to dance. She does this very silly little dance when music comes on the TV. She waves her hands in the air and opens and closes her hands, and then spins in a circle! It is hilarious. Tonight she was pretending to talk on the phone, jabbering away, and then she went over to Cainan, held the phone up to his ear, and said "hello". She is also our bad one. Arlington was never as devious as she is. She will look at us, and then laugh and run off to do something she shouldn't. And when she gets caught, she keeps going, laughing all the time thinking she is so funny!
Here are just a few pictures from today.

Tuesday, September 18, 2007

Laid back Tuesday

Not much to report today for a change! Arlington went to pre-K just for the morning and Finley and Cainan and I spent the morning playing at the house. It rained all morning, so we couldn't go anywhere. Not that I usually venture far with two babies, butt a nice walk would have been good. We did get that walk in this evening, and for the first time in a long time it was cool and breezy outside. It was nice to walk and not sweat!
Funny story I forgot to add yesterday. Cainan and I went to the grocery store to get his baby food, and the lady in the check out stand looked at Cainan and his stitches and said, "Aw, poor baby - did he have a nose job?" Yes lady, we got our 15 month old a nose job. People are truly crazy.
Finley was cute today. She put her baby doll on a pillow, put her little blankie on top of her, and patted her to sleep. It was cute! I remember when Arlingon was small and did that with her babies all the time. Finley patted the baby pretty hard - she won't be babysitting any time soon - but it was cute none the less!
Arlington was busy this afternoon making art. She made crowns for everyone in the family and all of her stuffed animals. They aren't quite done she tells me, so I couldn't take any pictures. She also made bows to put around all of her stuff dogs necks. She really loves her art.
Cainan is looking better each day in the swelling department. His left side of his face is still pretty swollen, but I do see the swelling decreasing slowly. For the first time since his surgery, he slept all night without waking. I think cleaning out his nose plugs helped. He head is also looking a little better. The redness on the back of his head is definitely less. I was instructed to remove his helmet every hour and leave it off for ten minutes, let it dry completely and also cool his head down with a cloth. I fashioned a little cloth/hat that wraps around his head to keep the cool on there for a few minutes. He looks hilarious with that on. I should take a picture. But I see it working. I also got advice to strip him down to his diaper and leave him that way until his body adjusts to the helmet. That also helped. I noticed when I removed the helmet he was barely sweaty. Florida weather and a sweaty, helmet wearing kid do not mix. But I see improvement, so that makes me feel better. We have come to the conclusion that it is definitely heat rash, so we are dealing with it as such.
Today was not a good eating day for Cainan. I think he really hates having to eat baby food. He cries every time we feed him, but we trudge through, because he needs to eat! He mostly wants pediasure and yogurt, and we are dealing with that. I just want him to eat, so I make sure he gets at least 3 jars of baby food a day and two cans of pediasure. But he is getting better at opening his mouth and stretching his lip a little. And he even puts his lips together and breathes out of his nose - so nice to see! This is going to be a slow recovery, but once we are on the other end, we will realize how short the "bad times" were in the general scheme of things. For the most part he is a little tropper, and we are seeing more smiles every day.
I am the one who forces him to eat, clean his mouth, fix his nose plugs, wipe his head, put on his arm braces, yet he clings to me and looks for me. We really had a turn in our relationship in our short hospital stay. Before he was happy to see me, and came around to play, but now he cries when I don' pick him up or pass him by with just a little rub on the head. He comes to me before Mat. I call that progress.
Here are a few little pictures.

Monday, September 17, 2007

Black and blue and hungry too!

Cainan's right eye is turning black and blue. That is normal - it is the side of his cleft, and so it had the most trauma. It is also the only side that is swollen. But it does look less swollen today.
Anyway, poor baby is really wanting real food. I am having to feed him pretty often during the day to keep him full. Today he had two cans of pediasure and three jars of baby food. He took it all and did really well. I have to basically drop the baby food into his mouth from the spoon so that the spoon doesn't touch his stitches. That is fun. WE have to cradle him like a baby because he won't close his lips to keep the food in his mouth. If he isn't leaning back, it all comes running back out. That is interesting!
His spirits weren't as good today. He was slightly whiny today. Mostly because it was just he and I here. He wanted my undivided attention like he received over the last two days. I was trying to clean up a little and do some laundry, but he just wanted me to be with him. He was better after a nice nap and his sisters were here to play as well.
Also, I noticed that he wasn't able to breath out of his nose and was drooling a lot more. From the picture you can probably tell he has a plastic piece in his nostrils. He has to keep those in for two weeks. I called the doctor's office, and they told me that I could remove them to clean it and put it back in. And sure enough - it was clogged. But you would not believe how long that thing in his nose actually is! It was about an inch long! Took me by surprise! He was NOT happy with me removing it - mostly because it was taped on, and less happy with me putting it back. But it came out and went back in easy, so at least I know I can do it if I need to.
Also, he is still having some kind of reaction with his helmet. We think it is heat rash or contact dermatitis. I have an internet friend who works with these helmets as well and I sent her some pictures, and she thinks it could be an allergy reaction to the helmet. Great!!! But I still think it is from heat because he sweats REALLY awful, and seems to have the same bumps a little on his back and top of his diaper area. I called and spoke to our doctor who did the helmet, and she thought it could be heat rash as well and gave me some instructions. She didn't say stop wearing the helmet. She will see him on Friday, and if it isn't better by then, maybe she can tell me what we can do. His head is already looking better, so I hope we don't have to stop the treatment. I remove the helmet still once an hour and cool down his head and wipe off the helmet, but it doesn't seem to help much. We will see!
Anyway, the girls are doing really great. Finley is getting a little better. She still has a runny nose, but we think she might have some allergies. I think I will have her tested in the near future so we can get her some relief. And Arlington is doing great. She has blisters on her hands from swinging on the swings at school so much! Each time she goes out to play (twice a day at school) she only swings. So she finally developed some blisters, silly girl. She is band from the swings for a few days!
Here are just a few pictures from today.

Sunday, September 16, 2007

Home from the hospital

Hi everyone! Thanks to everyone who sent us well wishes and prayers. We are home from Cainan's cleft lip surgery! We got to come home after only one night in the hospital because he is doing really well. The surgery went well yesterday. We were supposed to go in at 9am, and didn't go in until 10am, but Cainan never complained. He was busy playing the whole time, and did just fine with the wait before the surgery. The surgery lasted just under 2 hours, and everything went off without a hitch. I went to be with him in recovery, and he was doing well. I was able to give him some juice, and that won him over. He had about 2 ounces of juice (out of a syringe) and then they gave him morphine, and he promptly fell asleep. We spent about 1 hour in recovery, and then we went to the floor. On the floor he had 6 more ounces of juice and slept again for one more hour. Then I tried really hard to keep him up until his bedtime, and he did pretty well with that. He got a little tired and cranky around 6pm, but then I gave him a bath and that made him happy again. He fell asleep aroudn 7:30pm. I think he would have slept all night if the nurses didn't come in every 2 hours to do something! They kept waking us both up for one thing or another. He didn't cry at all overnight, but he didn't sleep all night either! Oh well. It was noisy in the ICU unit where we were, and that didn't help either. Yes, we were in the ICU for our stay. Because they did work on his airway, he had to stay there and be on a monitor. That tied us to the room, which was a little hard. He wanted to get up and around, but couldn't go far! But after a so-so nights sleep, we were up at 6am. He took two small 1/2 hour cat naps this morning, and then at 11am had a CAT scan (as pre-op for his upcoming palate surgery). After that, we were free to go. He drank about 4 ounces of pediasure, and was ready to hit the road. We were home by 2pm. He looks really good. Really different! His face is quite swollen, so when you see the pictures know that he didn't gain a bunch of weight! He hasn't required any pain medication. He is a trooper. He has to wear arm restraints for 2 weeks so that he doesn't touch his lip. He has to be on a liquid, then soft diet for two weeks until the wound heals. He gets the stitches out this coming Friday. I think he is going to tire quickly of the diet, but what can you do? I don't want to chance ripping those stitches.
So that was our adventure. We are so happy to be home. I think he will do much better being here at home. He is already playing with his toys and enjoying his freedom!

Saturday, September 15, 2007

We are off to surgery

Just a quick post before we leave. Today is Cainan's lip surgery. We have to be at the hospital by 7am. We think surgery is around 8:30-9am if they don't get behind. He can have clear liquids up until 6am, so I am going to wake him up and give him some before we leave. That should hold him over a little bit! I am spending the weekend at the hospital while Mat is at home. If you don't see any posts on the blog for a few days - that is why! I will post when I get home. We will either come home Sunday or Monday. I will try to have Mat give everyone an update! Think about us!

Thursday, September 13, 2007

Ear tube surgery TODAY!

This morning Cainan had his ear tubes placed without incident! We had to be at the hospital at 6:15 am. It is about a 45 minute drive to this particular hospital, so we left around 5:15 just to be on the safe side. We checked in, and had to wait about 15 minutes before we were called back. The nursing staff couldn't have been nicer. The doaded on Cainan and were really sweet to him. Cainan was so busy exploring the pre-op area that he didn't even complain once about not eating. He was all smiles and easy going - which helped. I don't think they see a ton of children. He had a lot of visitors from nurses and staff while we were waiting our turn. All asking about him, his adoption, his lip, his helmet. And just generally admiring what we already know - how cute he is! The nurse that we had was really wonderful. She used to work at Johns Hopkins - so no wonder! At around 7am, the anesthesiologist came to talk to us about how he was going to put Cainan to sleep and how they were going to try to make this as easy as possible for him. They didn't want it to be traumatic since they knew he was having another surgery on Saturday, and didn't want him to be afraid then. The anesthesiologist was really wonderful with him as well - wanted to hold him and everything! He held him the whole time we talked. At 7:10, they gave Cainan Versed - a medicine he took by mouth to make him sleepy, and "forget" what was going to happen. It started to work in about 5 minutes, and he got heavy in my arms. He didn't move much, but was all smiles. I laid him down on the hospital bed to change his diaper, and he didn't try to get up. I reached for him to see if he wanted me to pick him up, but he was so relaxed, he couldn't even raise his arms. Everyone thought that was really amuzing! That is when they took him back. They like to get him relaxed so that when they took him from me, he didn't really care, and that was true. He went right with them. They took me to the waiting room, and by the time I got a drink and started to read a magazine article, the doctor came to get me. I thought she was going to say she was ready to start, and she was already done! It had been about 15 minutes total. She gave me some instructions and told me that the surgery went well. They drained a lot of fluid from both ears - the right (where his cleft is) more than the left. She said he will be hearing so much better now. They took me back to see him, and there was the anesthesiologist - he was rocking Cainan and had him wrapped in a warm blanket! Very cool. Cainan was fussy, and the anesthesiologist told me that was normal. He would be cranky from the anesthesia for about 20 minutes, and then he would reorient and be fine. He really cried - he wouldn't even let me console him. After about 15 minutes, they let him have a drink, and he stopped. Then he got to have milk and some crackers, and he was back to his happy self! We left about 10 minutes after that. From the time the surgery started to the time we hit the car - 1 hour!! Can't be that. We were home by 9:15. He was happy all day - no problems. He played, and you could really tell that he was hearing better - or at least different. I could call him from further distances away, and he responded quickly. He played with his toys like he was really hearing them for the first time- very neat. He was happy and it was fun. What a good boy.
We had a playdate today with the neighbor kids. It was a lot of fun. They came over to play with Arlington, and even played with the babies some. They are ages 3 and 5, so Arlington played well with both. It was nice to have some company as well, as their mom and I got a chance to chat while the kids played.
Here are two pictures from today

One month since Gotcha

I wanted to add this post, because it has been one month since Gotcha day for Cainan! It is hard to believe that a month has gone by already! It has been a busy and fun month, and he has made so much progress since he came home. We couldn't be happier that he is now a part of our family.

Wednesday, September 12, 2007

Ear tube surgery tomorrow

Tomorrow is Cainan's first surgery. He will have tubes placed in both ears to help drain all the fluid that has been building up in there from having a cleft lip and palate. I spoke with the surgeon today and she talked me through the consent on the phone and told me all about the surgery. I love that they don't know I am a nurse, and talk to me like they would any other parent. That is how it should be. But I do get a chuckle out of her explaining all the terminology. :) Now I know what it is like to be on the other side. But the surgery is only about 10 minutes. The whole thing from putting him to sleep to him waking up in the recovery room is about 1 hour. So we are hoping to be home by around 10am if all goes well. Please think about us tomorrow while Cainan has his surgery in the morning. We know that all will go well, but your well wishes and prayers are always welcome.
Today was very uneventful. Finley stayed home from school with Cainan and I, and Arlington went to pre-K just until 11:30. We stayed busy all day - mostly wiping noses and changing diapers, and playing with toys. Tomorrow Mat will stay home with the girls in the morning while Cainan and I are gone at the hospital.
Here are a few cute pictures from today.

Tuesday, September 11, 2007

Helmet day!

Today Cainan got his helmet! It looks really cute on him. He is adjusting to it. He tried to get it off right at first, but didn't fuss about it. For the most part, he has left it alone. We have to take it off every hour for the next couple of days - just for a minute to wipe his head and wipe the helmet until his body temp. adjusts to having it on. He is sweating in it - no doubt! Cutting his hair was the right thing to do. And then every night before bed he has it off for one hour to rest his head and for us to give him a bath and make sure he doesn't have any red areas. He wears it 23 hours a day. We have no idea how many months he may have to wear it, but the average it 2-3. We are hoping by Christmas he won't need it anymore. Only time will tell. He is in bed right now, just playing around, but hasn't fallen asleep yet. Hopefully he will sleep okay in it. It may take him a few days to get used to it being there all the time. He is a little trooper! We have to go to the office every 2 weeks for an adjustment to the helmet as his head starts to change shape. It is really cool. The drive to the office is 1 1/2 hours, so that is not so cool. But it is the same office we go to for his cleft lip/palate stuff, so we have to go there anyway!
On a fun note - Cainan and I had lunch today at McDonald's. It was IN the hospital! I guess that is a good way to get hospital customers to have a fast food joint inside their hospital!
Otherwise, today we spoke to the ENT office about his surgery on Thursday. We will probably have to be at the hospital around 6-6:30am to get him prepared for surgery. He will love that. The hospital is about 45 minutes away, so we are going to have to leave really early. We should be getting a call tomorrow from the hospital with all the details. We got his medical clearance (again) from the pediatrician today, so we are all set!
The girls are doing great. Finley is still sick, and acting cranky. She doesn't have a fever or anything, just a really runny nose. She is staying home from school the next two days (she only goes three days a week), so hopefully that will allow her to recover a little. She and Cainan have been getting along better. Much less toy fighting. Tonight we took a walk around the block, and Finley was feeding Cainan fruit puffs, and he was letting her! And they held hands a little bit, and played really nicely together. They are in the "tolerating" each other stage.
Cainan is also walking more and more. He will go long stretches now with walking. As long as he has a goal to reach, he will walk to it. It won't be long now, and he will be walking full time! What progress he has made in the month since Gotcha!
Also, just on a personal note, I wanted to tell my family friends on this 6th anniversary of September 11th that I love all of you, and thank God for you every day. I remember right where I was this day 6 years ago - in Johns Hopkins Children's Center where I worked as a nurse - in the elevator a stranger told me that a plane had flown into the World Trade Center. I thought he was joking. I had just taken a little girl to surgery. I ran back to the floor and everyone was glued to the TVs. We tried to shield the kids from what was happening, and it was really hard. We were very close to the pentagon, and they were trying to figure out how to get the "non-emergent" patients out of the hospital to make room for all the people they expected from the pentagon. That never happened since there wasn't anyone to bring. Then the hospital went on lockdown and no one was allowed to come or go, and we all had to stay a really long shift. It was a really awful day, and as I watched the memorial today, the memories are still very fresh in everyone's minds. We hugged each other a little tighter today and were thankful that we are all together.
Here are some pictures of our little ones from today! Enjoy!

Monday, September 10, 2007

Appointment today

Today was Cainan's pediatrician appointment. They were rechecking his ears to see if any fluid had gotten less. It hasn't. But his ears aren't infected, and that is good. He also got cleared for surgery today from a pediatrician stand point She filled out all the paperwork and said he is good to go! That is a good sign. And he weighed in at 18 pounds, 4 ounces. He has gained one full pound in two weeks! Whoo hoo!!!
Also, this afternoon we got a call from his Ear nose and Throat doctor with a date for his ear tube placement. It is this Thursday the 13th! Yeah! We probably need to get yet another clearance from the pediatrician, but she should be able to do it without seeing Cainan, since she just saw him today.
The only problem with Thursday is that school is closed that day (for some reason). So both girls are home and we were supposed to have a playdate with the neighbors. Sigh. It figures! We will have to work out who will be staying home. The surgery is short, so we won't be gone long.
Here is a cute picture from today.

Sunday, September 9, 2007

Ah, the weekend just gets better and better

Well, the Pletcher girls are going downhill fast! :) This is not their weekend. It looks like Finley is indeed sick. She slept better last night, but has done nothing but sneeze and get her nose wiped all day. She even crashed on the floor this morning, asleep, which she never does! Mat looked over, and there she was - sleeping on the rug. Poor thing. All kids are down for a nap now, but not before an eventful morning!
Finley -well, we decided to give Cainan scrambled eggs this morning. He has really limited himself in breakfast choices - getting picker every day. He really just wants fruit, but he needs to gain weight, so it is a daily battle. Anyway, Finley saw these eggs and wanted some. She did love them. BUT - it looks like she is allergic to them. Sigh. I was really hoping she wasn't. For those of you who aren't aware, Arlington is allergic to eggs (and peanuts, penicillin and has a lactose intolerance!) We have not seen the same reaction out of Finley when she eats cake/baked goods like Arlington, but today - same thing. Face got all red from where ever the egg touched her. And then it got worse. She threw up the egg, and everything else she had eaten for breakfast. We weren't sure if it was because of the egg reaction or that she might have a stomach bug. We just gave her toast and water for lunch just to make sure, but she kept that down. She seemed to be feeling better before nap as well - happily playing. But this morning was rough for her.
Arlington - well that girl cannot have an uneventful day. Mat took her down to the lake behind our house to feed the fish. On their way back, he spotted a few hornets near our gate. He opened the gate and told Arlington to run in, but she just stood there. Well, one landed on her leg and - yep! Stung her. That probably hurt bad, and she started screaming. Mat brought her in and we put ice and baking soda on it, and she felt better. She lay on the couch for awhile and now is resting in her room. After her eye yesterday and this now, Mat has decided to take her for a treat when she gets up!
Cainan - he is the only one that is not injured or sick. But today he got his hair cut! We needed to get it cut for the helmet, and tomorrow there just isn't a lot of free time, so I took him this morning. He sat on my lap and he was a very good boy. I think the razor felt like a little massage! He never moved. He looks so different! We didn't shave him bald, but close. It is just little peach fuzz left now. Arlington isn't sure she likes it- says "it doesn't look like Cainan any more. He looks like Pap-pap". But he looks cute. Also, he is getting better and better at walking on his own. He will walk all the way across our carpet in our family room and can stand alone. AND he is starting to crawl a little better on the tile! And I taught him the sign for "all done". It is really helping at meal times that he knows a couple of signs. He doesn't seem as eager to yell for food. He knows his hand motions get him what he wants
Here are a few pictures.

Saturday, September 8, 2007

Saturday at the Pletcher house

Today was a fun day. Mat was at work today catching up on some research, so I was alone with the three kids this morning. Finley is getting yet another cold (go daycare) and so she was slightly grouchy this morning. She didn't have a great night - kind of tossed and turned, so I knew we were heading down the "sick" path. I think for the past month she has been well for 3 days. Poor thing. Anyway, once we got to lunch time, a family friend who has a little girl Arlington's age (same family from a previous post that has the twins) came and got Arlington for an afternoon of play at her house. So from 12-6, Arlington was out having a good time with her friend. The babies and I stayed here, and we had lunch and nap and I relaxed! LOL After the babies woke up, we had a nice visit from Finley's nanny who watched her from the time she was 10 weeks old until before she started daycare. We had a nanny take care of Finley her whole first year of life - hence all the colds she is getting now going to daycare! But Finley remembered her and took to her right away. She didn't even want to come to me when it was time for Lucyette to leave! It was nice to see Lucyette again. We haven't seen her in awhile for she has been away for the summer. I took a picture of her with Finley. Lucyette and her husband stayed for a good while and we caught up on everything. It was their first time meeting Cainan as well, so that was nice.
Arlington came home around 6, but around 4:30, I had gotten a call from our friends saying that she had stepped in front of a swing and got hit in the eye. Her eye was swollen and it was hurting, but she didn't want to come home! She is too funny. Our friend was happy to keep her, but wanted to give her motrin for the pain. When she got home, her eye was indeed very swollen - it looks like someone hit her directly in the eye. We have been putting ice on it all evening and I gave her more medicine before she went to bed because it was still hurting a bit. Hopefully tomorrow it will be less swollen, but only time will tell! Poor thing.
Anyway, that was our day. We can never be "uneventful" at our house!

Cainan playing with a matchbox car. He played with it for a long time!
Finley with her nanny, Lucyette

Cardiologist appointment

Friday was Cainan's cardiologist appointment. It was a successful appointment! He had an EKG done, which was normal. The cardiologist listened to Cainan and said that it was a very slight murmur and that it was "innocent". He would not need antibiotics before surgeries or procedures. And he will grow out of it in time. She said that it might get worse when he has a fever/illness, but that it will still not cause him problems. He will not be limited in activities, so that is good, because he is very active! She told us that we would not need to see her again. Yeah! Mark a doctor off the list.
So he has been cleared for surgery from a cardiac stand point. The ENT doctor also called yesterday and said that the results from Cainan's audiology test gave her enough information to go forward with putting tubes in his ears. Because it was Friday afternoon, though, I probably won't hear from her nurse until Monday with choices of surgery dates for that. she is going to put in a semi-permanent tube. She said they should stay in for 3 years, which is wonderful. She said that she didn't want to put in tubes that would stay in longer but would cause scarring, and we agreed. And she said that because Cainan will probably need life long tubes (as most cleft kids do), so she didn't want to put in something that fell out every 6 months to a year. We agreed to that as well. So that is where we stand. On Monday hopefully we will have a surgery date for his ENT tubes as well. We were told the procedure only takes her about 10 minutes, so probably no more than an hour total with getting him to sleep and waking him up. It is outpatient, so he would come home right after he wakes up.
This weekend we are not planning much. We are getting his hair cut in preparation for his helmet. He sweats a lot, and so his hair will always be matted under the helmet if we leave it as is, so we are cutting it off. I am sad to see it go, but I am sure it will grow back quickly!
Here are some pictures.

Thursday, September 6, 2007

Hearing Test today

So today Cainan had his hearing test so that he could get his tubes placed in his ears. It was a waste of time for the most part, but now it is done, and we can move on. They did check and he still has fluid in his ears despite three rounds of antibiotics. Big surprise. They did the tympanogram which shows if there is ear drum movement - nothing. Too much fluid in the ears. Again - no surprise. Then they did try to do the play audio test with him, but he was more interested in fish crackers than in paying attention. He did turn every time the audiologist spoke to him - and did it correctly, but when she spoke softly, he didn't hear her. She said he seems to have about a 30% hearing loss in both ears, but with the tubes and fluid coming out of his ears, he should regain that. He will be retested again after he has the tubes placed. My ENT doctor wasn't in the office today, but her office staff will give her the results from today, and I should hear from her tomorrow. Then hopefully we can get the surgery scheduled. I am hoping we can do it before his lip surgery, but I am not that hopeful. It is outpatient, but we would have to squeeze it in mid week next week. So we will see.
Otherwise, we had a nice day. Cainan and I played a lot today. He is a funny guy. He learned to nod "yes". He catches on quickly, and loves to repeat what we do. Finley is walking solidly now, and doesn't crawl at all anymore - not even at school. And Arlington's teacher told us today that they are talking about families around the world today and read a story about that. She said they got to the part of the story where the family was from China and Arlington jumped up and said, "My brother is from China!". She was all excited. Too funny.
When we got home today we had a little surprise. A family friend had sent us a giant fortune cookie with a message of luck for our family. It was really cool! I took a picture of it and put it in the slideshow below. Thank you to the Morfords for the delicious treat!

Wednesday, September 5, 2007

Another fun day!

Hi everyone! We had another good day. Today Cainan learned the sign for "more" and how to drink from a cup! I just decided to try it - he is always trying to drink out of Finley's. I took the stopper out, and he could do it! And he didn't spill any more with that than he did with the cleft bottle, so I decided to switch him. It is nice, because he is chewing through the nipples on the bottle. And he didn't mind the switch at all! This little boy takes change in stride, which is nice. So score one (two) for Cainan! I am hoping to teach him a few more signs, like the speech therapist suggested, until he can work on words.
Today I spoke with the occupational therapist. She is going to see him starting on the 24th. She is going to work on getting him to use his thumbs and crawl correctly on the tile. There are about 1 million hoops to jump through with the insurance before we can see her, so we are waiting until after he has his surgery. Same with Physical Therapy, except it isn't that hard to see her. For some reason the insurance company doesn't deem occupational therapy as important as physical or speech for any child, so it is harder to get clearance. We are assured he will qualify, but we need to get paperwork filled out first. Fun, fun! He will see the physical therapist after the surgery as well. We are so close now, that we are going to wait until after that is completed. I spoke with the speech therapist, but only for a few minutes and I am waiting for her to call back so that we can chat more. He needs that most of all, and she really wanted to see him prior to surgery, but I don't know if that is going to be possible. She is really busy, and I am having a hard time getting her to call me back due to that busy schedule. So we will have to see. If not, she will see him after. Again, not that big of a deal - as long as I can get him a scheduled time and day, then I am set. The therapies will last between 45 minutes to 1 hour, so three hours a week just for therapy. Don't know how we are going to do that, but we will figure it out! I think that the PT and OT will be short lived therapies, and that we won't have to see them very long (hopefully). Speech is another issue. I see that being long term. Our insurance will only cover 39 visits a year, so we will have to see what happens after we get 39 weeks into next year to see where he is. Sigh. Go insurance. There is a Florida law that states that insurance has to cover speech for cleft kids, but I am not sure if that law will override the 39 visits things. We will have to inquire. :)
Anyway, we also set up an eye appointment for him on the 28th to have his one eye looked at. It tends to cross and be "lazy" so I want to see if they think it needs to be corrected or it will fix itself over time. He may have to wear a simple eye patch a few hours a day for a few months to get that eye to strengthen, but that should be it.
And the last appointment we made today was to meet with the general pediatric surgeon for his circumcision. He is going to hate us for sure, but we decided to do it. He has the appointment to meet the surgeon on the 8th of October. I wanted to mess with that in October since that was a free month surgery wise. (Not any more, but you get the point).
so I think he is set! You would never think that one little boy would need a pediatrician, an ENT, a general surgeon, an eye doctor, a craniofacial specialist, an audiologist, a helmet, and three therapies all at the same time. But I know - for those of you who have/had special needs kids - this is not unusual. In our case, these things are major right now, but with time, will slowly disappear until we don't have any appointments at all! He is going to be a new boy before we know it!
As for the girlies in our house, Finley said the word "apple" today! She has about a 20 word vocabulary now. And she calls Arlington "sissy". It is so cute. And Arlington is a genius as always! :) She is loving pre-K and is doing a wonderful job there. I think she will be reading before we know it.
Enjoy some pictures from today.

Tuesday, September 4, 2007

Free day Tuesday

Today we didn't have any appointments, so Cainan and I enjoyed a free day! After we dropped the girls off at school, we came home an played for awhile, and then went to visit my co-workers. It was nice to see them, and they enjoyed seeing Cainan. My boss blessed Cainan and prayed for him and his upcoming surgery. It was very sweet. We stayed about 45 minutes and visited with everyone.
Tomorrow we don't have any appointments either, but Finley will be home with us during the day, and Arlington only goes to Pre-K (no after care). So it won't be a quiet day in the least!
Anyway, I wanted to share a little amusing story, non-Cainan related. It is about our little Finley. Arlington was eating her dinner in her playroom (don't ask) at her little kid table. She, of course (for all of you that know her well), got up from her table and started walking out into the family room to talk to us. Finley had been playing in the living room at the time, and all of the sudden, I didn't hear her making any noise any more. I went around the corner, and there she was - in the playroom eating Arlington's dinner! Little piggy. She has just finished eating!!! She was munching on her sandwhich. Nice.
Here are some pictures to enjoy.

Monday, September 3, 2007

A day of firsts

We had a few firsts today. Today was the first time I took all the kids out together to the store! I just needed a few things, so I took the stroller and Arlington walked, and we had a good time. It was nice to get out, and it didn't take us long to get ready and out. I am getting speedy!
And Cainan had his first experience with an American restaurant today. We went out to lunch together and he was a good boy. Getting two high chairs was an experience, but we were able to keep everyone entertained during the meal. It was fun.
And today is Cainan's first labor day. He didn't do any labor - he played all day and took a nap. What better way to spend the day?
Just a side not for all family - Finley is finally walking basically full time now. She hardly crawls at all. The lazy baby has finally figured it out! She is a little unsteady and it takes her forever to get anywhere, but at least she is walking! Cainan will be next!
Enjoy some pictures.

Sunday, September 2, 2007

15 months old today

We had our friend take our first family picture last night. This week in Arlington's pre-K class they are talking about families and have to bring in a picture. We didn't have any yet with Cainan, so here we are! I can't believe we got everyone to look at the camera and no one was crying!
Cainan turned 15 months old today! We wanted to have him with us by the time he turned 15 months, and we were successful! It is hard to believe that from the time we first saw his picture on another agencies website to now has only been 4 months!
Today we are all venturing to the pool. This time I am going to try and take the camera! Cainan seems to really like the pool, but not crazy about venturing far from our arms. Our other two are water babies, so we want him to love to swim as well!

Saturday, September 1, 2007

Lazy Saturday

Not much going on today. Mat is working and I am home with the three kids. The little ones have been acting kind of tired this morning and cranky, but as long as I kept changing their activities, they hung on until 1pm for a nap! We are having some friends over this evening. Close friends who have a little girl Arlington's age, and a set of 9 month old twins! We have been friends a long time, and Arlington and their little girl are the best of friends. WE will have 6 kids in this house - we could open our own daycare! But it is nice that we have kids all relatively close in age so that they can all play together.
Today is the first day we haven't gone anywhere, and that has been nice. No doctor's, no school, no errands. Just staying home all day. Maybe that is why the kids are cranky! They want to go shopping!
Here are some pictures from today. There were several cute ones.