Ralph

So the first day home was pretty much gravy except that we were tired. I had updated Thursday that things were going well, and they were, until Thursday night/early Friday morning. We went to my nephew's football game and Anna was all over the place. She was up and down the bleachers. Apparently she didn't get the message that she had surgery 2 days prior. We got home and put the kids to bed and got Anna all hooked up to her feeding pump. Things were quiet (except for Kenneth's snoring) until about 4:30am when I was greeted with a showering of Anna puke. I'm talking a whole night's worth of tube feeds plus a bunch of other undigested food that had apparently been hanging out in her stomach for awhile. It was vile and it repeated 2 more times, each one right after I would finish cleaning her up from the previous time. Kenneth was up doing laundry like a madman trying to keep up with the Ralph rate. Although she never really had any fever to speak of we hoped it was a virus and not that she was not tolerating her feeds. She laid around a lot Friday so we just knew it was viral. Friday night we just ran Pedialyte through her tube for half the night and she did fine. We thought the "virus" was gone. Just to be on the safe side we restarted her feeds last night at 1/2 the prescribed rate. They ran at 15ml/hr until about 6am when it happened again...the puke monster reared its ugly head. This time it was a bit less and luckily we were sleeping in the recliner under a blanket so the clean up was much easier and thank goodness because Kenneth went back on duty today. So, it appears the virus was no virus at all. I think tonight I will skip feeds all together because I have to work tomorrow and will leave early and do not want Christy to have to deal with puke. I plan to call Dr. O's office first thing tomorrow and see what we need to do. She probably needs something to "jump start" her gut for a little while. I knew there would be bumps along the way and this is just one of them. I am exhausted beyond what words can even express but still feel we have done the right thing. I know this will resolve and she will do fine. This seems to be a pretty common thing in newly tube fed kids. I am giving boluses of Pedialyte to prevent dehydration and she is doing OK with that so I consider that good news. I know God's plan for us is perfect and that all of this has a purpose.

Microvasive Button

We got to come home yesterday shortly after lunch and all is going well so far. We gave Anna a bolus feed yesterday afternoon and then ran her on the pump throughout the night. She woke up once asking for a bottle and once with pain. She drank about 3 ounces when wanting the bottle and then we gave her Tylenol for pain and she did fine with those solutions. I expected her to be hungry because she had not had anything by mouth in almost 2 days. She had Cheetos for breakfast today (her choice) and ate some jello for lunch. I just gave her another bolus feed since she didn't take much lunch. She is already getting used to it and just laid on the couch and let me feed her. For the past month or two that we have been toying with the idea of the tube I had googled a million things about the tube and never really found the specifics of what I was looking for. I am going to try to provide some of that information here so that maybe the next person who ends up where we are will have a place to go and have some answers to their questions. Anna's Gbutton is called the Microvasive and it is manufactured by Boston Scientific. It is small and feels like it is made of silicone (not sure about this though). Here is a picture of it..

I had just given her a bolus before this picture and LOVE that her belly looks so full!! So anyway, to fed her you just open up the little flap and hook the feeding set to it.

The little blue piece just plugs into the hole in the button. We taped the tubing to her stomach last night just to prevent it from pulling. The button has come open without us knowing it a few times for whatever reason (I think the car seat has something to do with it) but the button has some type of one way way valve so things will not leak out unless we use the tube that is to vent the gas out. We haven't had to use that yet though. So even if it comes open it will not leak which is nice. The pump is tiny and comes with a little backpack that the pump and food bag fit in it and we just hang it up on the wall by the bed. The blackberry by the pump is just for size reference, it really is a much smaller pump than I expected.

Thank you again for your continued prayers. We have been blessed beyond measure!

Quick Update From Cook's

We got a call from Cook Children's yesterday that they would be placing Anna's Gbutton today. That is service- you agree to the tube on Friday and have it placed on Tuesday. So we came in early this morning. All is going well. I do have to say that Anna has been in a bit more pain than I expected but she is well controlled with her pain meds. About 6 hours after the tube was placed they began running Pedialyte through it. They will do that until about midnight when the will start with the Peptamen. The home health company is supposed to deliver our feeding pump and a case of Peptemen before lunch tomorrow and then hopefully we can go home. They will stop the continuous feeds in the morning and give her a bolus feed and make sure she tolerates that also. I have to brag on Cook's- this place is awesome and we have been treated so nicely from the housekeeping staff and cafeteria staff to the nurses and physicians. It is so nice to have a wonderful children's hospital to go to that isn't too far away. Carly is staying with my parents and she is doing well also. I was quite apprehensive about leaving her for a hospitalization since the last one I left her for lasted so long but she has done well. She came to visit Anna today but was a bit afraid of her due to Anna's IV and feeding tube. The IV will be out before we go home and I know Carly will grow accustomed to the button and all will be well. God has really taken care of us right down to the tiniest detail, as he always does. I have to say that watching the nutrition flow into Anna's body has also breathed new life into me. I have not felt this relieved in a very long time. I know now that no matter what she chooses to eat, we will nourish her. I know there will be bumps along the road but I really wish we would have done this sooner! Thank you so much for your continued prayers for us! I have not really had much sleep (not that that is new) so I hope this post makes sense but if not, oh well...

Uncle

Cartoons & Breakfast

Chillin'

We went for Anna's GI appointment with Dr. O today. I was thrilled to find out we were indeed there on the right day this time. Anna had gained a pound since the last visit which was 2 months ago. I have never been so proud of a pound in all my life. Dr. O and I discussed Anna's progress a bit and then I just finally told him that Kenneth and I are not opposed to the Gtube and are actually ready for it if he feels it is appropriate at this time. We have fought long and hard but we have lost this battle. We have tried everything we know how to do but things are just not getting any better. His response was, "then let's get it scheduled." It seems so strange but I have nothing but peace about this decision. We have spent almost 2 years now obsessing about every calorie and every bite and every ounce that we could get Anna to take and we can finally take a deep breath and let that go. If she chooses to eat, great, and if not, that is fine too. I can go to bed at night not fearing what will happen if she gets sick or have to listen to her little tummy growling and yet still not be able to get her to eat. It is kind of like that by surrendering we are actually gaining some control. Dr. O and I discussed the new feeding plan and decided it will be to let Anna eat whatever she wants during the day and put her on a pump at night. We will start slow and increase her feeds until she is tolerating the right amount. She will be using a formula called Peptimen Jr. It is hypoallergenic since she still does not really tolerate milk products. They used to put a Gtube in first and then weeks later go back and place the Gbutton but Anna will get the button right from the start so there will be no need for another surgery in the near future. We will have to just stay overnight at Cook's for one night for pain control and to make sure all is working well. It is hard to put into words how I feel about all of this. It isn't that any of this is what I wanted but it is the best thing for us, right now, given the circumstances. It is our prayer that this Gbutton will allow us to get Anna off of all of the meds she is on and allow her to sleep naturally because she will no longer be starving. It is so hard every night to load her up with adult doses of adult medications and know that they are really not so good for her. So what some might feel is devastating we are smiling about because we know it has to get better from here...

Such A Monday

Anna woke me up for the third time, it was finally 6:30am though so I decided to go ahead and get up. I cooked some biscuits, got Carly up and ready for school, dropped her off at school and headed home to shower. Anna and I got ready and loaded up for the 45 minute trip to Denton for her GI appointment. I had been in deep thought about this appointment for awhile and was so glad it was finally here. We got to Denton at about 10:15 and her appointment was at 10:30. I was doing SO good! We went to the desk to check in and I told the receptionist we were a few minutes early. Turns out we were a few days early, the appointment isn't until Friday. UGH. We drove back home. At least Anna took a little nap in the car. I had a nice lunch with my mom. Anna refused to eat anything. I came home and chilled for a bit and went to pick Carly up from school. Carly is a compliant kid who really aims to please. She is very afraid of being in trouble. She is a nervous Nellie. She attended the same school for 2 1/2 years and never once got in trouble. I know that is impossible to believe but it is true. She was just that good. Well, all good things must come to an end. And they did. Today. I am not blaming it on the new school, that just happened to be the scene of the crime. I walked to Carly's classroom and her teacher met me at the door to inform me that Carly had a bad day. I assumed this meant she had been whiny or something. I was so wrong. Instead, she decided during nap time that she didn't want to nap so she got under a desk and took a marker and colored the carpet. She had an accomplice and they were both sent promptly to the Principal's office. They got to spend the afternoon's playtime scrubbing and cleaning the carpet. Nice!! She got quite a lecture from Kenneth and I, she had to write an apology to her teacher, and she is not allowed to use any art supplies (her favorite things) for a week. She is devastated but I am pretty sure she gets the point.

"Dear Ms. Blankenship, I am sorry for coloring on the carpet. I will not do it again. Carly"

The Amazing Brad and His Royal Subject

I cannot express how incredibly wonderful our speech therapist is! Brad has worked so hard with Anna and she really has connected with him and seems to want to please him. He is SO patient. He has to change activities with her about every 2 minutes. She keeps him on his toes. Not only is Anna learning more words, her words are becoming more clear. She has perfected Mama, Daddy, Carly, up, kitty, hungry, more, thank you, yes, no, cheese (she loves the camera) and drink. This may not seem like much to some people but to us it means the world! We were really worried for sometime that Anna might not talk. We are really starting to see some progress now. She is also making more noises and attempts at different sounds. We still rely on signing too but hope that some day she will be 100% verbal. Luckily we will have Brad until Anna turns 3 and ages out of Early Intervention. I will try to snap a picture of him during speech this week so that you can visualize the amazing Brad. Until then, here is a video of perfection... (Again, you will hear it better if you pause the music feed)

P.S. The Valium is not really helping Anna sleep. I am beginning to think about a rubber room for Anna and Kenneth and I will take the Valium. That makes it a win win situation, right?

Dexterity?

For all of the areas Anna is behind there are some things she is doing that seem far ahead to me. For example, I went to bed last night and turned my alarm on never paying attention to what the clock said. I usually look at the time on the channel guide on the tv and really see no need to compare it to the alarm clock time. So I went to sleep around and slept until about 2:30 when Anna got up. She is not sleeping again! I was up with her until about 4:45 and finally she and I both fell back asleep. The alarm went off at 5 and I got up to get ready for work. I really had to leave the house on time because I had to drop the kids off at the fire station since Christy is out of town. Every time she goes out of town I am reminded more and more of how blessed we are to have her in our lives. She comes over on the mornings I work and Kenneth is still on duty so I do not have to get the kids up so early. She is at our house at about 5:45am- yes, she is a saint. Anyway, so I got up at 5 and took a shower and as I got out of the shower Anna peaked at me through the bathroom door- she was up again. She "helped" me get ready for work. I was all ready and it was only 5:45 according to the alarm clock. I still had plenty of time...until I looked down at my watch and realized it was really 6:10. Anna had at some point the day before reset the time on the alarm clock. Needless to say I was late for work. But hey, it takes dexterity to change the time so I'll call this one "therapy." It was a good laugh! I called the neurologist and discussed the not sleeping. She is getting up around 2 am each night and staying up from then on. It is killing us! He said to continue to trazodone and we have added valium as well. I started her at half of the dose he prescribed. I hate giving her all of these drugs but don't know what else to do. She needs sleep and so do Kenneth and I. So she got her first dose of valium tonight, wish us luck!! She is talking more and more and adding words to her signs. Here is a tiny little clip of her saying "more." (You can hear it better if you will pause the music feed first) She was motivated by gummy lifesavers. Who wouldn't be?