18 month-really 19 month check up

Our 18 month well baby appointment was originally scheduled for when we were in the hospital. Since OCH wanted us to do a follow up appointment we went ahead and rescheduled it as soon as we could. The only way to do this was to put us in as a sick visit. Whatever it takes!

Current stats:
weight:17 lbs 14 oz (actually taken at therapy this morning) < 3%
height: 29 cm - 3%
head: 17.8 - 25%
Current teeth count:
* 8 up
* all 4 molars (1 year) are in the process of coming up. The bottoms are a lot closer than the tops. No wonder she has not been happy. She has not been sleeping well and wakes up in an inconsolable fit.

Last week we went in for a bad cold and cough. Since it has not really improved/stayed the same he went ahead and temporarily stopped the Bactrim (used for her immunity) and put her on Omniceft. Hopefully, this will stop it. If she gets too excited she starts with a coughing fit. He thinks it may have turned into a sinus infection.

The pictures:
On Sunday I put Kaylie down for a nap and asked my brother Michael to listen for her so I could take a nap as well. I told him he could just knock on my door to let me know and I would come and get her. The nice brother he was he decided to take her into the living room with him so I could rest some more. I actually heard her and called for them but no answer. Knowing that she had only slept for 30 minutes I knew something had to have woken her up and that she was probably still tired. After a few minutes I decided I was just hearing things because all I heard after the initial cry was football. I ended up getting up about 30 minutes later and this is what I found on the floor. Michael said they were playing a game where he put his head down and she would follow. The game stopped when she no longer got up. I ended up waking up my snoring child an hour later.

Can stacking

Kaylie has become quite the little helper. Since all of her foods have to be hand made to a specific recipe we have to buy a lot of canned food. After the other day she has learned where they go and wants to help put them away. As I looked through the mail I realized she was going to the bags, picking up a can, and going in the opposite direction of the pantry. Instead, she was taking them and stacking them on the mat in front of the sink. After I caught her she must have thought she was in trouble because she then tried to bring me the rest. I love her!

Daddy's lil helper

I started filming after she had already given him several cans. I am sad because I stopped filming a few seconds before she started clapping and cheering for herself. She has definitely come a long way when it comes to understanding commands and requests!

Discharge day pictures

Today was our first full day home. Jason stayed home with her and tomorrow and Friday I will be with her. Silly girl was so happy to be home she refused to take a nap. Overall, good first day home. Better than expected. I think I expected the worst!

Last night my computer was not cooperating so I was not able to post pictures.

Before

This was the day we were admitted. Click on the picture for a closer view. Jason and I did not realize how sick she looked until we compared it to a healthy picture. Unfortunately I did not get a before naked baby picture so this will have to do.


After

Nothing needs to be said about the difference a month makes!

Were Home!

We are all finally back under one roof and so far things have been going well. In typical Kaylie fashion Kaylie left the hospital having thrown up her last 3 out of 4 meals. She wanted to make sure they missed her!

Once home things moved incredibly smoothly. We made due with simple meals and maintained the protocol given to us. Kaylie did great and responded well to the same program that we used in the hospital. Their were a few times I thought she might get sick but she was a champ and held it down.

Kaylie's weight at discharge was 18.0 lbs. I will post pictures tomorrow of our last day.

We wanted to thank everyone for their love and support. We are thrilled to have our little one back with us at home.

We can't wait for everyone to see her again. Although she looks the same (with the exception of her weight) she does not act the same. You will have to see for yourself what I mean. It's a wonderful thing to see!

Fun at OCH

Yesterday afternoon the Stall family joined us at the OCH to play. Fletcher and Kaylie had a blast. It was a great way for each of them to burn of some energy. After her they left she ate and then passed out. Good times!

Tomorrow we will finally all be under one roof. We can't wait!

Pictures Galore

As of right now we are still scheduled to discharge on Tuesday. I do not see anything holding us back so most likely we will be enjoying a nice Tuesday afternoon with our baby girl at home. We can't wait!

Here are some pictures from the last week or so. Enjoy!


Before she came here she did not like anything around her wrists. Now look at her! Nonna...do you thing Mrs. Vine will let her have some of her bracelettes?


Her other new favorite thing since coming here has been to play and love on her dollys. She has learned how to hug them and give them kisses.


Kaylie is currently in the process of getting several teeth. She has one that is on the verge of cutting the skin. It is the 4th tooth on the bottom. It is actually to the left of her other three (If you are looking at her). From what I can see it looks like she may also be getting some canines. Poor thing. I know it must be hard teething all at once.


HEY YOU! Over there...do you notice anything different around here?


Look closely...


That's right...my tube is gone. Don't I look gorgous!


Washclothes are her new toy. Who would have guessed mommy could buy her a pack of towels and skip the girly toys.


Look at her pudge! Isn't it adorable. What you can't see is her belly hanging over the container. It tends to lead the way when she walks.




This is one of the other little girls in the feeding program. She is one of the most beautiful little girls I have ever meet. She is so sweet and loving. Kaylie will miss her when we leave.


The music therapists came for the kids while she was feeding so to make up for it they gave her a private session. If she takes on the musical side that many members of our family have I could see her taking up the guitar. She seems very interested in it. She pulls it out of the play room whenever she can find it.




The other thing she likes to do with her dolly is feed her a bottle, give it her own paci, and try to cover/swaddle her in a blanket. I about died laughing when I realized she was giving her own paci to the doll. It just amazes me what they pick up in everyday life.

HEL .........P

Before entering the feeding program Kaylie's speech was incredibly delayed. This is normal considering she has difficulty with her feeds. Usually the speech will come after the feeding improves. This has definitely been the case.

Before therapy...she said da da and a few letter sounds but still lacked in several key sounds. We would get mum, mum, mum only when she was mad so I would not really classify that as mom. She would say dah for dog and clear her throat to say uh oh. It sounded painful but was adorable all at the same time.

After 3 weeks of therapy...She now says the following. They are in order of appearance. Surprisingly, they are all clear.

1) da da - No mistaking this. She knows who he is and can say it very clearly. It makes my heart melt because usually it is accompanied with the biggest smile and laugh you have ever seen.

2) Uh Oh - She no longer clears her throat to say it. She doesn't say it as often as she had but she can now make the correct sounds.

3)dah - I am not really sure if this is a word or not but it is her way of calling for the dogs so we are going to give it to her. I still insist I heard her say dog one day at Jolie's.

4) all done - She usually says this during her feeds when she has no desire to be there or when the timer goes off signaling the end of her meal. She has grown accustomed to the timer with her feeds and gets super excited when it goes off. She smiles, pushed the button to turn off the timer and says "all done" while clapping. I will have to video it one day.

5) hello - On Thanksgiving we were playing with her telephone. We answer the phone and give it to her. She took the phone and said hello.

6) ma ma - In the past two days ma ma has officially made its appearance. I got to listen to her on the phone while I was at work this afternoon repeat it over and over. When Jason would say it she would say it back. Jason said she walked up and down the halls all day saying it. I am no longer chop liver =).

7) Help - This is our newest word that made its appearance today. Whenever Kaylie starts to fuss because she can not figure something out or get something she wants we will say "help?". Then will follow it with showing her the sign and saying "help mommy." She was trying to get a toy from the table and got frustrated. Jason asked if she needed help, repeated it once or twice and the next thing she said was, HEL...P. She combined the first three sounds and accentuated the P. Jason was so excited he tried to get her to say it for me while on the phone but instead she just repeated mama. I guess I can't complain!

18 and counting

Today we hit 18 lbs 2 oz. Her little legs are getting super chunky. She no longer looks sick. What a blessing.

With her increase in fluids they are dropping her formula feeds at night all together. This is one step closer to us not needing the feeding tube. The trick now is for her to take in enough food and maintain/continue gaining her weight. Way to go girly!

The one hiccup we are having right now is with her 2nd feed of the day. She continues to throw that one up. Our guess is it has to do with her meds. They have been giving them to her all at once and that is not something we have done. We think her Prevacid may be upsetting her stomach. We are planning on addressing this with the doctor. The other thing we are wanting to address with the GI doctor is how quickly she is able to empty her stomach. Her reflux was made worse by the fact that she still had a good amount of food in her stomach several hours after she had eaten. This could also be part of the reason she does not eat much.

The honey bear is proving to be successful! She has now finished off 2 4 oz. bears and has started taking water in addition to her milk. They have also taken her off her formula and have successfully switched her to whole milk fortified with Carnation Instant Breakfast. The transition did not phase her. Goodbye 26.00 a pop formula.

Kaylie continues to get better with her eating each day. The amount of food she takes increases each day. Her energy levels have shot through the roof and her speech has improved in an incredibly short time. Even though I am scared to death to take her away from her safety zone I know she will be all right.

Photo Disclaimer: Please ignore the food on her face. It is really hard to get things off of her nose without taking the tape off. The last thing I want to deal with is the tape on her face or risking her tube coming out.












For Thanksgiving we were blessed to bring Kaylie home for 6 hours. It was great. Kaylie was so excited to be home and see her dogs. They had a therapy dog at the hospital the other day and you could just see how excited she was to pet her. Believe it or not I think the dogs were more excited to see her than she was to see them. She definitely loves them both and can't wait to be home to see them.

The hardest part of the day was having to put her in her car seat to say goodbye. I had just finished a four day stretch at the hospital and it was Jason's turn. I keep reminding myself that we only have a week left. Kind of crazy!