Random pics

Here are some pics I've taken of Autumn this month.

She has been loving that she can pull herself to a sitting position in her crib and thinks she is such a big girl. She also loves to give the flirting eyes looking at you from the side.

I think she has just about outgrown her big brother being able to hold her.

This is her silly face or what she does when we ask to see her teeth. This is also the face we get after we tell her no and she is trying to work us over.

We are teaching her young on how to play Guitar Hero.

I'm in deep concentration on trying to beat Gage. I know I posted a video awhile back of me singing Jingle Bells to Autumn and her crying. Well, now anytime I sing ANYTHING she frowns and starts to cry. It's so cute that I have to do it over and over again until she decides to go into the 60's and then I have to stop. Even getting her out of the bath tonight I was singing something I heard on TV while dressing her and looked down at her and she was frowning away. So, I guess no more cheerful singing for Autumn.

We still have not heard back from her GI dr. about the surgery. I have changed her feeds to every 3 hours during the day and feeding over an hour time. At night we do two 6 hour feeds over 2 hours. It has seemed to take her vomiting down to only once daily. So, this is working until we figure out when her surgery is going to be but feeding this often and having to keep her still for an entire hour is challenging. Part of me wants to get this all done and out of the way before we move but the other part of me just wants to try and put it off until we can get settled into our new home so I can really spend more time working with her recovery. Honestly, I really don't want to go through another surgery and hospital stay and just want to put it off as long as possible but I also know she needs it. ;)

Time for surgery #9

Well, really the only way to improve Autumn's reflux is to have a surgery called a Nissen Fundoplication. You can google it if you are interested in all the details. ;) It will hopefully prevent her reflux and she will start eating by mouth once again. We were told more and more kids with the Chiari Malformation are having issues with reflux that will not be outgrown so surgery is our best option to make Autumn more comfortable and hopefully move on with our goals for her. We also talked to her ENT about her not tolerating her PMV valve (speaking valve) and he said there could be an obstruction or ganulation in her upper airway. The only was to check is to do a bronch scope that would need to be done in the surgery room. So, we are going to coordinate the GI dr. and ENT to do both of their surgeries/procedures at the same time. If there is some granulation then he can fix it while they are in sugery. If everything looks fine he will drill some holes into her valve and see if that helps her tolerate it better. He did give us some positive thoughts and said most kids like Autumn really turn a corner between 18-24 months of age and start doing much better. He's positive she will get better with weaning and getting her off the vent and trach one day. ;)

Well, after much home searching we have found our home (almost). we have decided to purchase a newly built home in Rockwall. There is one almost down already with a floor plan we like and one that will be completed in March. So, we have our realtor working out the details for us and soon we hope to have a deposit on us a new home. Whoo Hoo!

Better get back to packing. It's sad to be leaving our first home as a family but we are excited about what our future holds on our new journey. We are now living with my parents so I can only get on the internet when we are in town so you may see less posts than before. We are thinking sugery for Autumn next month but will post more when we have the dates.

Hello

Just wanted to check in and give you a quick update. We are in Dallas for appts. and house hunting. Yesterday Autumn had a gastric emptying study done that lasted 90 mins. Good thing we did not have to stay there the full 4 hours it could of taken. We have not gotten the results back from it yet. This morning she had her upper GI done. They gave her 30 cc (1 oz.) of barium and she was completely refluxing it. So, we learned it does not take much for her to be refluxing so it is more severe than we ever thought. She has no obstructions in her GI tract so that is good news. We now just wait for Dr. Adams to get all the results and then talk to us about what our options are....probably different meds, continous feeds, or maybe even surgery. I just hope we can get it figured out and fixed and maybe she can go back to eating by mouth or even improve her respiration issues. We are doing our first house hunting this afternoon and seeing the house I have fallen in love with....hope it lives up to my expectations. I think it's a perfect location and the kids schools would be across the street from each other and only a couple blocks from home which would help me out taking care of Autumn without nursing. ;) James is not sold on it so I hope he likes it as well. ;) I've been wanting to post pictures and videos of Autumn but too busy to do it so maybe I can get it done next week sometime.

More tests

Well, even with increasing Autumn's prevacid and placing her on Reglan she is still vomits at least once a day. So, now the drs. are going to schedule her an gastric emptying study and an upper GI. They already scheduled her upper GI for Tuesday while we are in Dallas and if there is a spot available for the other test they will be doing that on Monday. If not, we will have to check about getting it done next time we are in town which will be the end of March. This is one reason I am so ready to move...so we can take her to get tests run asap and not have to wait until we are in town next. I just hope we can get answers soon and get the problem fixed. She still will not eat by mouth so I hope once things get better for her she will start to pick up on eating again.

SOLD!!!

Well, we came to an agreement with our buyer. She is getting 6,000 less than she originally was going to get. Yuck for us but hopefully she sees it as a blessing for her. ;) Now we can really start packing and searching for our new house. Whoo Hoo!

Appraisal

Okay, so the appraisal on our home came in almost $7,000 less than our selling price. Not good. So, we are back to negotiating and I really hope we can come to an agreement because if not then we have to wait 30 days before relisting our house again. I'm just so ready to be closer to Autumn's drs. so we can stop this craziness of driving back and forth to Dallas!!!

Kynsie Rhena

I could not resist to post a picture of my best friends new baby girl. Tanya and I met in 5th grade and have been through so much together. Well, she has 3 handsome boys and I'm so excited that she is now has her little girl!! I know I asked for prayers for her because she may of had some heart issues awhile back but baby was born this morning at 37 weeks and is doing GREAT!!! I think she's perfect. I'm sad though I will only be around for a few more months and then will be moving away...I so wanted our kids to be friends as well but I know we will still visit each other and the kids will always know each other.