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!

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 Forbes.com.

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!

Why Alice.com Is Great for Parents

I am not receiving any compensation from Alice.com for this post, although I did just add their "refer-a-friend" button to my blog and I will receive $10 off  for each person who signs up and purchases using that button.  But, really, I don't care if you do it through the button on the blog or not, I just think Alice.com is awesome and thought I would share.  For those of you unfamiliar, Alice.com is an online retail option.  They carry all the same things that your local Rite Aid, Walgreen's, etc. would carry.  But, they offer free shipping and great prices and even the ability to use online coupons for your purchases.  I signed up for it a while ago and have used it a few times to purchase formula and paper towels in bulk.  The prices for formula were competitive with our local chains - only one place actually beat their price - and with the free shipping, there was no reason for me to go packing around 10 cans of formula rather than get it delivered straight to my door! 

I personally like Alice.com because I can get on, pick what I want to purchase without having to load the Bean into the car, put her in a "who-knows-what-has-touched-this" shopping cart and tote her around a store!  I will still need to go to the store for more grocery-type items, but as I plan for my six weeks of "single parenting" (my husband will be working in Michigan for six weeks starting the end of June), I definitely will utilize this option much more frequently!  The delivery was not overnight, so it will require you to plan at least a couple of days ahead for what you need, but that isn't bad with free shipping! 

The other thing I love about Alice.com is the origin of the name.  All of you probably remember Alice from the Brady Bunch?   The tag line for the website is "Everyone Needs an Alice!"  I think that's awesome.  In addition, their shopping layout is also really easy to use - they have symbols for all the major rooms in your house (toilet paper roll for the bathroom, pacifier for nursery, bed for bedroom, etc.) and then all things that would be needed in that room - supplies, cleaners, etc. are under that link. If you don't like shopping by room, you can shop by manufacturer/brand, green/organic, premium selections, best deals, or recently added.  Its really genius!

Finally, your orders arrive in a cool Alice.com box with a free gift inside (usually a pen for me), and your items.  Right there at your door!  No loading/unloading the car.  No loading/unloading the kids.  No fighting with the heavy bags or awkwardly packed bags.  No getting to the store only to find out that what you wanted to get is sold out or that you forgot your coupons (coupons available for products will automatically pop up in Alice.com for you) or that you can't remember what it was you were going to the store for in the first place.  Okay, maybe that last one is just me.

So, I encourage you to check out Alice.com - parent or not.  Its a pretty cool online shopping site and if you use the button on my blog you can get $10 off of a $50 purchase - and remember - no shipping! 

Unexpected Motherhood

As I approach my first Mother's Day NOT spent in a hospital room, there is some time for reflection.  I don't think motherhood is ever what we EXPECT it to be.  After all, first-time mothers have NO IDEA what to expect.  We all watch other people parent.  We may even have taken care of other people's children or younger siblings, but when a child is actually yours, it changes everything.  In addition, each child is different - so even if you have had previous children, you aren't quite sure what is going to happen.  But, I think parenting a chronically ill child or a special needs child (or both, as the case may be), is really something for which no one can be prepared.  And when you combine the two - first-time parenting with chronically ill child - the unexpected aspects of motherhood really start to pile up.  Bean is doing wonderfully this Mother's Day eve...she is starting to do so much that a baby her age should be doing - chattering, cruising around our rooms both walking and crawling (walking still requires some furniture aids), clapping, entertaining herself with toys and household objects, and smiling a ton.  She is still wearing some 0-3 month clothes at almost 15 months old, but she is eating regular food, drinking formula like a champ and has no extraneous tubes to be cared for.  Amongst heart moms, I consider myself to be incredibly lucky...many have so much more to deal with then we do.  It seems strange to some to call myself "lucky" - but, I realize that I am just that - lucky.  But, I also realize there are things that are "typical" for me that other moms will never have to deal with.  Giving multiple medicines at 8 a.m. and 8 p.m. each day (with a few in between as well).  Getting blood drawn on a regular basis.  Visiting cardiologists and gastrointestinal specialists and being visited by physical therapists and developmental therapists.  Its all part of our lives now.  And that is why I loved the post, "a Mother's Day reflection" over at Our Transplant Journey.  It captures so much in just a few simple statements.  My favorites include:

I never thought I'd be in an emergency room watching a doctor and a group of med students smell my daughter's diaper.

I never knew how terrifying a simple stomach bug could be.

I never thought I'd know what an IEP is.

Those never knows become empowering "now I know"s soon enough.  And someone else out there who needs to know will seek out information and help from us and those unexpected nuggets of knowledge become small gifts of comfort and understanding that we can give to others.  Life may have been easier with a more typical child, but it would have been a life unaware - unaware of the gift a child is - whether she be well or not, the gift that knowledge is - whether it be sought out or forced upon us, and the gift that appreciation is - appreciation of milestones reached very late, of a birthday (or Mother's Day) spent outside of a hospital, of the amazing gift of life given to us by a total stranger who suffered a much worse fate than us.  I am truly thankful and appreciative this Mother's Day! 

Happy Mother's Day to ALL moms - may your motherhood journey, whether it was what you expected or not, be one of joy and love.  And to all those moms out there who have lost their children - to illness or to accident - including our donor's mom - my heart and thoughts and prayers are with you.  This must be a terribly difficult day, but your children are celebrating you somewhere and their love is still in your heart.  May you feel that love today and all your days.

A Year Ago...Yet So Very Far Away...

So, I thought it would be interesting to look back over our Carepages and see where we were a year ago today.  Interesting entry - Mackenzie was still in the hospital from her FIRST stay (a week at our local hospital with what was thought to be RSV, then transferred to Sacramento's Sutter, where her enlarged heart was discovered, so after a week she was transferred to Stanford's Lucille Packard), and had just been moved to the infamous "3rd Floor" where the non-ICU patients go (sometimes called the "step-down" floor".  Jason was at the hospital by himself for the third day in a row because I had some kind of laryngitis/cough thing going on (gee, think it might have been some stress?) and we just found out we had gotten into the Ronald McDonald House for the first time.  Here is that entry:

Mackenzie got promoted to the Third Floor today at Stanford! That means she is out of the PICU and into the "transitional" area. Jason tells me her new room is very nice and she is in a real crib now - her first crib! She is still handling the oral medications quite well and she got her first bottle feed today in over three weeks and Jason said she sucked the 10 ml down in about 30 seconds and they had to take the bottle away from her to make her stop drinking (they don't want to overdo it). So, I think we may be able to start bottle feeding every three hours again now. This is great timing because we also found out we got into the Ronald McDonald House, which is right by the hospital and will allow us to be there for most of the feedings, even in the middle of the night. Cara Cupp, my college debate partner and roommate has been incredibly gracious to let us stay at her place since we got here and its been great - only 20 minutes to the hospital and she even got us Ling Lings at Costco this weekend! :) But, now that Mackenzie is eating on a regular schedule, being closer will make things much easier. I just hope I can get over my illness as I can't move into the Ronald McDonald House until I am better since they have some of the outpatient kids staying there as well as families.

Stanford is going to go ahead and complete all the necessary tests/evaluations needed for a transplant. This way, if that becomes necessary, Mackenzie can be immediately listed instead of having to wait while the tests/evaluations are completed. We are all hoping that it never is necessary, but it is much better to be prepared if it does happen. So far, Mackenzie's heart is looking pretty stable - not good, because its still big and pretty weak, but as long as its strong enough to do the job its supposed to do, she can get by with the big, weak heart. One of the cardiologists last week said her heart was just "too filled with love" and needed to get a little smaller. Hopefully the big love continues even as the heart gets smaller and stronger.

I miss seeing Mackenzie! I am drinking lots of OJ-Mango juice trying to get better...so fingers crossed I get a voice back and lose this occasional cough!

Obviously, Mackenzie's heart did not stay stable for too long...but, that is a story for another day.  A year ago...we had hope...and today, we have hope for a totally different reason!

Tomorrow the local newspaper is coming to do a story on Mackenzie.  I had written them during April hoping to get something in during Donate Life month, but the reporter wasn't available until tomorrow.  But, as the reporter said, "The need for donors will not go away in May."  Truer words were never spoken...I hope the story goes well and I can get my house looking decent tomorrow.