Sunday, June 27, 2010

Teeth, Feet and Food

Note: I spent a while writing a post and then lost it during the posting process...a little frustrating! Hopefully I remembered to include everything in the replacement post below!

Sounds like a pretty horrible combination doesn't it? Well, its all HAPPENING at the same time, but are not necessarily related! Bean has had one tooth in the side front of her mouth for a while - we have taken to calling her snaggletooth because of it. But, she is now getting a few molars in the back and it has definitely been a bit of a pain for her over the last week. Luckily she has not run any fevers and has only has had a slight runny nose for a couple of days. So, overall it has not been too bad. But, she has definitely been more moody and has not been sleeping all that well. All of her teeth are one side of her mouth right now and they aren't really lined up at all, so chewing is an issue for her. The order in which her teeth are coming in is also strange - usually kids get their front teeth first. But, post-transplant Bean was on Cyclosporine for anti-rejection medication. The medication has a number of side effects, which includes thickening of the gums. So, this could be the reason we aren't seeing any other teeth yet - a mom on one of the transplant email lists I'm on said it took her son nine months after getting off of Cyclosporine for his gums to recede enough to see his teeth (they were there, just under the thickened gum). So, hopefully, we will see more teeth soon. She came off of Cyclosporine in late October/early November. It would be nice for her to be able to chew her food!

And hopefully she will start getting more excited about the prospect of chewing food! The GI docs put her on an antihistamine to stimulate appetite, but it doesn't seem to be helping with her food intake. For a while, she was a pretty good eater - she liked cereal (both baby and Cheerios), sweet potatoes, carrots, yogurt. And she ate pretty good two or three times a day. But, she has now started to refuse to eat from a spoon. Finger food only. Which would not be bad if she had teeth to chew the finger food, but as it is, she eats very small pieces, very slowly and often tosses many pieces over the side of her chair to our dog. So, her intake is not very much for each meal. Because I don't know if this is just a phase she is going through or some oral aversion she has developed, I have requested an occupational therapy evaluation from the regional center. Her cognitive therapist says she definitely has a slight tactile sensitivity. She gets anxious when she is on grass because it pokes her, she refused to touch a spiky gel-type ball toy the therapist brought a couple of weeks ago and she HATED pudding painting because of the pudding on her hands. I figure its worth getting her evaluated to make sure there isn't some aversion we should be dealing with early on. Luckily she still loves her bottle and drinks formula well, so she gets plenty of calories and nutrition that way. And she is still small enough that her drinking a bottle doesn't look ridiculous. But, at some point, I would like for her to be eating more food and drinking less formula! Really, we are lucky considering she was on IV feeds for most of her first six months of life. A lot of heart kids have to keep feeding tubes in because they don't adjust well to eating after so many months without it. But, I would feel even luckier if she were eating food better!

Finally, her feet. Don't worry - they have nothing to do with her food! She just took her first few steps the other day and I thought I would include a short video! Enjoy!

Sunday, June 6, 2010

California Heart Connection Picnic Coverage

Although I was not able to go this year, I am really hoping to attend one of these picnics in the future (when Bean is a little older and can actually enjoy the activities and social connections).  The California Heart Connection, a group started by two heart moms in Southern California, hosts an annual picnic for the families of children with Congenital Heart Defects.  This year's picnic was the 10th one hosted by the group, with 80 families in attendance.  The picnic offers families a way to connect with others who are going through similar experiences, but in a non-clinical setting.  Its a great opportunity for both parents and children and a nice article was written about it in the Orange County Register, "Hope and help for ailing hearts."

In addition to hosting the picnic, the California Heart Connection has some great resources available on their website, ranging from help with insurance, support groups, printable forms, reports on research, etc.  It is not only applicable to those in California, but much of it could be helpful to anyone dealing with a CHD!

Positive Developments for HLHS Babies

Hypoplastic Left Heart Syndrome (HLHS) is one of the most complicated and serious congenital heart defects out there.  Treatment includes a series of surgeries, the first coming almost immediately after birth, called the Norwood procedure.  If this procedure fails, a transplant is necessary.  A new study shows hope for reducing the number of deaths and transplants needed in children born with HLHS.

The study, conducted at the Children's Hospital of Philadelphia, compared results between the traditional surgery - "a modified Blalock-Taussig (MBT) shunt, which carries blood from an artery branching off the aorta to the pulmonary artery" - and a new procedure - "he Sano procedure or the right ventricle-pulmonary artery (RVPA) shunt, links the right ventricle to the pulmonary artery".  The results were promising, with a 74% of infants with the RVPA shunt surviving and not needing transplant compared to only 64% of those receiving the traditional surgery.  These results are promising, although work needs to continue as the RVPA showed a higher rate of complications requiring "unintended interventions, such as needing stents or balloons to keep the shunt open."  But a 10% higher rate of survival without transplant is pretty promising.

For more information, you can read "In Infant Heart Surgery, Newer Technique Yields Better Survival in First Year of Life," at

Saturday, June 5, 2010

Zero = Perfect Score on this Test!

We got great news yesterday!  Bean's latest biopsy came back a zero for rejection!  This is the first time since her transplant that she has shown zero rejection and the docs were starting to consider changing medications (again) if it didn't happen this time.  So, we are all relieved and happy that she is (1) fully accepting her new heart and (2) able to start weaning off the prednisone (which may be contributing to her lack of growth to this point).  Prior to this, she has had mostly 1 or 1A results, with a couple of 3s thrown in for good measure (and three day hospital stays).  So, hopefully we have the medication levels figured out and she will continue to get these zero readings for a while.  We now get six weeks off from clinic appointments and a whole three months before the next biopsy!  A nice break in our travel schedule, especially with DH being in Michigan for work for six weeks!

Despite this good news, we also have to add another appointment to our long list of medical appointments we have for her.  The GI docs referred us to an endocrinologist to see if there may be some hormonal cause of her lack of growth.  She is on the low side of caloric intake, but not low enough that they thought it should cause her to be as small as she is - and she is small in both height and weight - she is proportional.  So, we have a pediatrician appointment on Tuesday and will ask him to refer us to someone at UC Davis so we don't have to drive to Stanford for those appointments.  Hopefully we can find someone there and will not have to add another trip to Stanford to the mix. 

Other than that, she is loving her weekly therapy through the Far Northern Regional Center with Angie.  She gets to play with all the toys that Angie brings in her big bag of toys and she is learning to put things back "in" to containers (versus just taking them out), to put pegs "in" holes (versus just taking them out), stack items, etc.  And she gets to play with bubbles, wood puzzles, and other cool toys.  Angie is fantastic and I can't say enough good things about the Regional Center here in the North State.  Bean is also getting physical therapy twice a month, but she seems to be quickly surpassing the goals they had set for her a few months ago.  She is climbing stairs (a little too well - had to put up a baby gate), cruising along furniture, crawling like a speeding bullet and has even let go to stand unsupported a couple of times.  Very exciting changes!  She is not talking at all yet - but, lots of babbling and a few things that sound like words - "up", "dada", "mama", etc.  But, she doesn't have a lot of purpose tot he words, so I'm not sure if she is really talking or just babbling more.

We are looking forward to summer in Chico.  There are a lot of fun things to do here during the summer and I plan on taking advantage of as many as possible.  There are movies in the park once a month, a family fun fair in one of our local parks each month (moves around from neighborhood park to neighborhood park), and of course the Thursday Night Market and Farmer's Market on Saturday mornings...and I am now part of the Chico Mothers' Club and we have a weekly playgroup, monthly bunco, and a lot of fun "field trips" for kids.  So, I'm planning on keeping busy this summer and taking advantage of my first summer with Bean out of a hospital and in our fun town!

First thing on the list of fun is a visit from our good friends from Arizona!  They come in on Monday and will be here for the week.  This means I need to finish reorganizing the guest room (which is a chaotic mess right now) and getting the house tidied up a bit, finish the laundry, and get stocked up with snacks, etc.  I'm looking forward to their visit and enjoying a little "stay-cation" while they are here.  There will be a trip to Lake Almanor to golf (well, I won't be golfing, but will be enjoying the scenery) at Bailey Creek Golf Course, an Oakland A's Game, Thursday Market, maybe a Chico Outlaws game, and of course some BBQing!

And, Six Years Later - Marking the Good Times

Hello!  Long time no write on this blog.  I have always included a link to this blog on my email signature to keep people reading Bean...