Goodbye tonsils!

Ailyn had her tonsils out on Monday the 13th. The surgery went well. The ENT said her tonsils were HUGE. Her adneiods grew back some so they removed them again. And, replaced her ear tubes.

The ENT told me this was going to be a rough recovery. She wanted to keep Ailyn overnight since she was a micropreemie. She also said there was no rush with discharging her since she has no gtube. We were concerned she wouldn't drink enough......and we were right. She flat out refused to take sips of anything (even Pepsi!!)

(a beautiful angel our friend gave Ailyn to watch over her)

Ailyn spent 4 days. On the 4th day, she finally would take fluids by a syringe. Camden was able to visit. Ailyn was so cute when Camden came in the room. She was so excited. Camden wanted to see in her mouth, and Ailyn opened up for him. Daddy was able to visit for a few hours a day, and she loved that too.

Our stay wasn't too bad at all. We were in the new hospital. It almost felt like a hotel. But, you quickly remembered it was hospital when a nurse would walk in every hour for vitals. The rooms were so spacious. The views were amazing! The playrooms were bright and cheery.

When we were getting discharged the nurse said "Sometimes kids do better recovering at home". She was SO right! When we got home, she got a long hot bath, some pain meds and her favorite chair. She then asked for a bottle. She drank 3 ounces!! After that I knew she was going to be OK.

It's been 8 days. Ailyn is still so sore. She still gets pain medicine every 4 hours. If she sleeps past her dose time, she screams in pain. She continues to drink her Pediasure awesome! She drank 33 ounces one day! But, averages about 24 ounces. No food yet..... we offer all day long.

It's been a long 8 days. But, the ENT said give it a good 16 days. (16?!!) And, so far, she's right. it's taking that long.  As long as she is drinking Pediasure throughout the day, I am not worried about weight loss.

Thanks for all the thoughts and prayers!!! And, a HUGE thank you to our friends who helped watch Camden so we could be with Ailyn the entire time.

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OH Happy Day!!!

Since the first day of summer, Camden has worn a big heavy cast. In the first few weeks, he was bummed. He thought his summer was ruined. But, after those few weeks, I had to tell him to stop running around and doing crazy boy things.

He never complained of pain. He refused pain medicine after a few days. If that were me, I would have been  in bed, on pain meds, for a week! Kids tolerance amaze me.

He would find various objects to put down his cast to itch. The only time he complained about itching was around bedtime. A ploy to stay up maybe?

If you ask Camden what the worst part of this cast experience would be the surgery. He didn't like that "you had to go to sleep". 

And, just for fun, I asked him what his favorite part of having a cast on was. He said "What do you mean??". 

Camden was VERY shy when strangers would ask how he broke his arm. We had our niece, Malia here for a month. She would do all the talking for him. It was very cute. 

He was very proud to have everyone sign his cast. I thought he would ask more but I think he was too shy to ask. 

I swear I feed this skinny thing! The massive cast makes him look even smaller. It was over 90 degrees on this day. He had to take his shirt off. I can't imagine what that cast felt like on the hottest days of the summer. He never complained! You could just see it in his face. His bright red flushed face ;)

Froggy held up pretty well too. We did have one emergency. Auntie and Uncle's puppy tried to chew his cast off. Thank goodness I walked in when I did.

Camden has been more clingy with me since the day he broke his arm. He's always been a cuddler, but lately he needs me more. And, I don't mind. I know it won't last forever so I am savoring every cuddle and cry for me!

OH HAPPY DAY!!!! He got his cast off!!!! 

The pins hurt when they came out. And, his arm was very sore for a few days. He couldn't bend his elbow for a awhile. He has to wear a splint for 4 more weeks. But, can take it off to bathe and swim. The first time he went swimming in a pool with a friend, he came home and slept 14 hours!!!!!

We are hoping to start PT this week. NO MORE broken bones please! That was NOT fun!

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The Good and the Bad

 

This summer has been full of good and bad for us. Some overwhelming and some amazing!

I'll start with some good....or so we hope!  We spent a week in Cape May, NJ a couple weeks ago. Ailyn and I were in the bedroom getting ready for the day. I happen to look on the floor and what do I see?? Ailyn's feeding tube!! I had another, quickly opened the box and tried to get the new one, and one back in. There was no way. I have no clue how long the tube had been out. I changed her diaper a hour before. 

The gtube at this point would have to be surgically put back in. I was told the hole closes very fast, it sure does! Ailyn eats 3 small meals a day and drinks up to 24-30 ounces of Pediasure. I was already starting to wean her feedings down. I called the GI and we agreed she was OK until we got home. 

Since then, the GI and I have decided to KEEP THE TUBE OUT!!! Ailyn is ready. I might be ready. 

Ailyn has had more word explosions! "mine", "that", "go,go" (is a car), "off", "O" (Obie, the dog) and "pool"

The bad news? It's bad. And, very scary. Ailyn is having seizures. I have a couple on video for her neurologist. She had an EEG last week. But, that was a joke. Ailyn doesn't stay still in her sleep, no clue how they think she was going to lay there for 30 minutes. 

She started getting these body spasms about 3 months ago. She finds somewhere comfortable, then her whole body tenses up, she drools a little. Very normal for someone with Cerebral Palsy. If they get to the point where she is uncomfortable, she can starts a medication to help relieve the muscle pain. 

Then about 4 weeks ago she started rolling her eyes in the back of her head while she has a spasm. She snaps out of it right away. We have an appointment very soon. Please say some prayers for A. 

We are starting to say goodbye to her Infant and Toddler therapists. Some of been with Ailyn since she was 3 months and 4 pounds!! They have watched her amazing progress over 3 years. Have been her best friends 4 times a week. I am not ready for this change! 

Ailyn will be starting school soon. Her first IEP meeting is next week. I am only going to agree to 3 days a week. I have MANY anxieties about her starting school. 

WANT the BEST news??? Ailyn has been taking 10-20 steady independent steps!!!!!!!! Crawling is still her preferred method. It's easier and faster..... of course we are trying hard to change her mind.

She tolerates her braces better now. I don't get 6 hours yet, but she doesn't cry the entire time they are on. She is so much steadier with them on and I wish she would just stop being stubborn (Ok, no I don't) and wear them! She takes steps without them just as good too.

Ailyn's ears have been a HUGE issue ALL summer. I think we only had 2 weeks off of an infection. We clear up one ear, then it moves to the other. I put drops in everyday. The last day on vacation, she was screaming, clawing at her one ear, making the outside bleed. We are assuming that tube fell out. The doctor wasn't able to see either tubes because they were all infected. I wasn't too concerned because Ailyn was to have surgery on Tuesday, August 7th to check her tubes and take her tonsils out.........

BUT!!! Of course, she woke the day before with a fever and a bad cough. Thank goodness we were able to reschedule for Monday August 13th. She will stay overnight. Please say prayers!!

Despite the bad news, we are having a great summer. Trying to get out as much as we can on weekends. Our week at the beach was AMAZING! Very relaxing. Look for pics soon!

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Camden's Lemonade Stand

 

WHEN:

6/11/12 (All day) - 7/15/12 (All day)

WHERE:

Sherwood Church
5 Sherwood Rd
Cockeysville, MD 21030
View map

My name is Camden. I am 7 years old. My friend Eliza raised money for Alex's Lemonade Stand and I thought it was a good idea. I want to help raise money for people with cancer. I want more people on the earth. I don't like to see sick people. Can you please help me raise money? You can donate money online or come to my lemonade stand on July 15th at Sherwood Church in Cockeysville. My stand will be opened from 11am-2pm!

FUNDRAISING GOAL:

AMOUNT R

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Let's hope this is it

Daddy and I got a sitter for the fourth and went downtown. We had an awesome time and even met up with our good friend Jimmy. Thank goodness because the next day was stressful!

Camden had a little anxiety the day of but was in great spirits. I think he was liking the one on one with Mommy and Daddy.

The one part Camden was worried about was having an IV put in. Turns out he had nothing to worry about. The nurse gave him some Valium and my already goofy Camden turned into a bigger goof!

I of course woke with pink eye and a cold that morning..... awesome

Once the Valium hit fully, Camden crashes his head down. They must time it because as soon as that happened, they came in to wheel him to the OR.

The worst 2 1/2 hours EVER!  And, especially after the surgeon came out a half hour into the surgery to tell us there was a complication. Turns out Camden had also fractured his growth plate. When he tried to put the pin in the bone, the bone broke off (dislodged from the wrist). No one caught this fracture on the 4 X-rays he had. I guess that is common though (not seeing a growth plate fracture). So the surgeon put a steel plate with pins in. The two surgeons that have been dealing with Camden's case, says this is something they have never seen. Which makes us very confused??  The rest of the surgery went fine. We got to see the X-ray of his arm now, WOW....poor kid has a steel arm!

Camden came out of recovery better this time. He lit up when I showed him the super hero Lego we picked out. They gave him a "blocker" that numbed his arm for 15 hours. At first Camden was worried not feeling his arm but as soon as he understood it was temporary, he calmed down.

We were told he would have swelling. Our discharge directions were to elevate and ice. He was discharged with good pain killers thank God.

The first night home went great. I think having the blocker and good pain meds was the trick. He did wake in pain but once the medicine kicked in he was fine. And, boy was he talkative on it!

Our friend Jimmy was down with his company to help restore power from the storm we had. He surprised Camden by stopping over. Camden was a little out of it when he was here. But, I know it meant a lot to him that his Godfather came to visit.

The swelling kept getting worse. He was good about keeping his arm up on a pillow...but he's 7 and was not going to lay down for 24 hours. In a way, I wished they had kept him overnight. We iced and did all we could but we had to call. The surgeon didn't call back so we went to the ER. Not knowing they didn't have a pediatric surgeon at this hospital, we should have called the office. The ER was great though. They called the surgeon on call for us. We were discharged and went to the office. It was a Saturday night so the surgeon opened the office for us. He was SO nice. Split Camden's cast, and very soon after, Camden had relief. 

All has been well since! I have to say "Don't jump off the table", "Don't run", "Don't climb the counter" 1000 times a day. He no longer needs any pain meds. He is very good about keeping his arm high on a pillow many times a day. Friday he will finally get a hard cast on!!!

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Not what we wanted to hear

The day we got home, Camden had an appointment to see a pediatric surgeon. We brought copies of the 2 X-rays he had done in New Hampshire. But, the surgeon wanted another. "Good", I thought. Maybe he wanted his own look at the bone. The break...below

When the ER surgeon came in to talk to me about doing a "close reduction", it all made sense to me. He was going to pull the arm strait and place the bones back together. He said there was going to be some room between the bone but that was OK. Since he is young, the bones have time to grow normal. This is what I understood as I stood in shock that Camden broke his arm AND needed surgery. My sister was with me, but we are not doctors! My Dad was away on business and the my friend who is an ER doctor, not a pediatric surgeon! So I trusted this doctor. (The new X-ray below)

The surgeon here at home came into the room...... a hour later. He wanted to discuss the new X-ray. He didn't like that the bone was shifted 15 degrees away from the bone. It wasn't even strait. You can see this clearly in the X-ray. He took so long coming in because he was calling hospitals and getting surgery times!

I know the doctor in New Hampshire did what he thought was right for Camden. I just wish I knew enough to ask what other options we had.

So tomorrow, July 5th, Camden will be getting 3 rods placed in his arm. He will get a hard cast during surgery. He can not have a waterproof cast. The cast has to be up over his elbow. Also, with the incisions, water can not get into the cast at all. It can cause infection.

Camden is scared and has a lot of anxiety about the surgery. He is mostly scared of being put to sleep and not waking back up. We are trying to make his summer the best summer regardless of his broken arm. We brought his cousin Malia back with us for a few weeks. She has been a Godsend and keeping him very busy. They play SO well together (and since she's a girl, she doesn't want to jump off couches or ride bikes down a hill, LOL)

Please say a prayer for Camden tomorrow.

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