Saturday, March 31, 2012

Tube Weaning

Tube weaning Juliana has reminded of potty training. You slowly work towards it, you try it out here and there, it's messy, it might not happen the first few times, you think it will never happen... and then one day everything clicks.

Of course there are also some major differences. Namely, tube weaning is one of the most exhausting and terrifying things that I have ever done. We have been working towards this for a year. Theoretically we have support from our GI doctor, our feeding therapist and our nutritionist, but ultimately I call the shots. They can all give me ideas (and they have) but none of them are here with me to evaluate what Juliana has eaten each day and whether or not she needs more. No one else deals with the fear that I am starving my baby while I wait for her hunger to kick in. No one else understands the raw emotion when she doesn't eat what I think she should or the elation when she exceeds my expectations. Most - but not all - of the professionals we've worked with do understand the emotional implications of having a tube-fed child. Those who have taken the time to understand her issues have been impressed by her progress.

I've said it before and I'll say it again: I truly believe that GAPS is the reason why Juliana now eats so well. I can't imagine what it would be like to try to stumble around in the dark to find safe foods for her to eat. Our path has been rocky at times but it's still getting us there. She feels good, and so she eats.

All of this to say... we now have an oral eater. It's now been about two weeks that I have not used the feeding tube at all. Juliana has maintained her weight during this time. The next step is to get her to gain weight - that is what will need to happen before we can pull the tube. And of course, I hope and pray for no regressions in her eating (that is something that we have experienced - temporarily - before).

Kids have feeding tubes for different a variety of different reasons. I am not an expert on anyone else's medical issues. That said, when the issues are related to the GI tract, then I think that GAPS is the answer for maximum healing. I try to be careful about making unequivocal statements like that, but everything that I have learned and experienced has pushed me in that direction. As parents of tube-fed kids we have a huge advantage - it doesn't matter if our kid doesn't want to eat a diet consisting of broth and liver! In this way I have always been thankful for the tube (and maybe once or twice I've wished that the rest of us had one, too...).

I would share the mechanics of our wean but I really didn't have a firm plan. Many people follow fancy schedules where they reduce tube feedings by a certain percentage for a certain number of days. I didn't do anything like that. I just started slowly dropping feedings until the next thing I knew, she was getting 3 oz in the morning and 3 oz in the evening. Believe it or not, even with giving her only 6 oz a day, it took some willpower to stop altogether and let her manage her hunger all on her own.

A few of my favorite resources during this season of tube weaning:
The Crunchy and the Smooth - Heath's wean was an inspiration to me very early on in our journey.
I was also inspired by Stella's story. (Her story is evidence that feeding tubes can happen to anyone - not just to kids with complex health issues).
On Stella's site I found a link to a lecture by Markus Wilken. Markus is a child psychologist who worked at Graz and has helped free hundreds of kids from their tubes.
Also check out the inspiring story from an excellent GAPS blogger on her formerly tube-fed son
Last but not least I have been very encouraged and helped by other posters on the forum Tube Fed Kids Deserve to Eat.

Monday, March 26, 2012

Therapies at 12 months old

Physical Therapy - we do it twice a week. We have a very competent PT who is clearly very knowledgeable and passionate about her field. Unfortunately, no matter what we try, Juliana hates it and cries or complains through most of the session.

Occupational Therapy - we do this once a week through Early Intervention. We do a few good things but mostly we're doing a repeat of things already done in PT. I keep the appointments though because 1) the therapist comes to my house and 2) for the moment I want to continue my relationship with the EI program. Juliana mostly tolerates these sessions.

Speech Therapy - Yes, you can begin speech therapy with a pre-verbal child! When I approached EI about adding on speech therapy I was told that they generally don't even evaluate until two years old, but that they may consider evaluating her at 18 months. These time frames were unacceptable to me; Calvin was speaking in complete sentences by the time of his second birthday. There is no way I will wait for a delay before I begin to implement therapy. Thus, we now have regular appointments with a speech therapist (who was formerly our feeding therapist). So far speech seems to be the most fun of all the therapies.

We're about to add two new therapies to the regimen.

First, we are going to start seeing another Occupational Therapist who specializes in sensory processing/integration disorders. This was recommended to us by our developmental pediatrician. I can definitely see that Juliana has a few sensory issues although they seem fairly mild in comparison to those I have read about. I am hopefully that by intervening at a young age we can help those issues. I am excited about the possibilities here. The unfortunate part? Out-of-network insurance coverage, and it isn't anywhere near cheap.

Second, I am about to mail in the forms for an evaluation with a neurodevelopmentalist. It's kind of a strange series of events that have put me on this path but it is a path that I am very excited about. I have been in contact with a group of mothers and several of them have met with a neurodevelopmentalist who is just a few miles away from me. For a long time I have been feeling like there has been something missing from Juliana's treatment protocols and now I feel like I have found the missing link. This is totally unconventional and therefore totally disregarded for purposes of insurance reimbursement.

If there is anything that threatens to cause burnout, it is all of this therapy. Therapy, therapy, therapy every. single. day. potentially for years. It is my earnest hope and prayer that as we begin some of the neurodevelopmental work (which will all be done at home) we can cut back on some of the other therapies.

Sunday, March 18, 2012

Real GAPS: Juliana begins Intro

Juliana is finally legit. For the past month or so she has been eating the GAPS Introduction diet.

Up until this point I hadn't felt comfortable embarking on the real deal with her. I wasn't sure if a baby could safely eat only stage 1 foods. I didn't want to do anything that could potentially deprive her body and brain of the nutrients it needed. I feared ketosis even though I wasn't totally sure that it was something that I should fear. No one could give me a straight answer - one thing I learned a long time ago is that very few people are willing to give real advice concerning a baby. Everyone is very careful; no one wants any blame. We still had some issues to tackle (eczema, constipation) and something had to change. She was about to turn a year old and I began to feel it was time.

She now eats broth, liver, meat, butternut squash, cauliflower, broccoli and coconut oil. She still takes probioitics and gets lots of sauerkraut juice as well as fermented cod liver oil. Do you see what's missing here? A lot of things compared to the Standard American Diet (a.k.a. "SAD"). But most notable to me is that she does not eat any grains. She also isn't getting any sort of dairy at the moment (though she has in the past and she will again). It's certainly a little intimidating but I was comforted by the fact that there are other (formerly sick) kids who are thriving on the same diet. Also I took a day-by-day approach; I would watch and see what would happen and if she was not doing well then I could instantly pull the plug and add something else to her diet.

Shortly after we began our new regimen I was browsing through Primal Body, Primal Mind. There was a chapter entitled "How important is fat to the brain?" and that's where I discovered this little gem:
The brain uses ketones in a state of ketosis. Cerebal ketone use is prevalent, for instance, in newborn infants nursing on fat-rich milk. The switch to dependence on glucose does not occur until carbohydrates are introduced into a child's diet... 
The body preferentially burns sugar whenever it is present, mainly to rid the body of this damaging substance any way it can. Sugar or glucose will also dominate as a source of brain fuel when turbocharged energy is in sudden demand, such as in an emergency. Sufficient carbohydrate stores in the form of glycogen in the liver are always available for this. No one ever needs to consume carbohydrates for glucose to be available to be available to the brain or body when needed. Ever.
This was a huge boost to my confidence and I felt sure that we were doing the right thing. It appears that time is proving me right; a month into this change and Juliana is doing really well! She has been eating better than ever, her skin has improved quite a bit, and she has picked up several new skills in a short time period.

These days Juliana is eating at least a half pound of meat each day (lamb or chicken). It's hard to estimate how much squash she eats daily but it's easily half a pound. She's done so well with this that it's time for me to start considering what to add in next... egg yolks? ghee? fermented coconut water? I am also trying to add different vegetables since winter squash is not very easy to prepare.

So that's where we are. It's expensive and it's time-consuming but we're seeing the best results that we've seen so far!

Monday, March 12, 2012

Ear tubes, lip ties and old wounds.

Several months ago David and I realized that Juliana's hearing was muffled. She didn't look when we called her name and she wasn't crying when the dog barked loudly. Shortly after this realization we learned that she had Kabuki syndrome and that hearing loss could happen in kids with Kabuki. We added an ENT doctor and audiologist to our long list of specialists.

Today was our third visit with the ENT. He's been keeping an eye on Juliana's ears and they have shown some improvement overall (thanks to GAPS, of course). These days we know that Juliana is hearing - she looks when we call her and she's also shown us that her speech is beginning to develop. Today we discovered that her right ear is looking much better but her left ear is looking worse. At this point it seems like we have given things enough time to improve and that intervention is appropriate. She will be getting tubes sometime in the next month.

I also asked the ENT to look at Juliana's mouth; specifically I wanted him to check out where her upper lip meets her gums. Nichole recently discovered her daughter's lip tie and it seems to be common among several GAPS kids. Of course I immediately checked Juliana's mouth and it seemed like she had one, too. Today's visit gave confirmation that Juliana does indeed have a lip tie. It will also be fixed at the same time she gets the tubes.

Here's the part that hurts: I've seen over a dozen people for Juliana's feeding issues. I've seen multiple doctors, I've seen lactation consultants, I've talked to LLL leaders. I've seen alternative practitioners that seem to be one step away from being voodoo doctors. I've seen three therapists that specialize in oral motor therapy. I knew to bring up tongue tie with several of these people but I've pretty much been blown off because Juliana doesn't have an obvious tongue tie. But not a single one of them has ever mentioned lip tie. It didn't cause her GI problems although it can do just that in some babies. But I will always wonder how it impacted her inability to nurse. She tried so hard but she just couldn't. It was hard to know at the time if the inability was due to tachypnea (maybe initially) or to low tone (her hypotonia is mild) or to GI pain (maybe).

I would like to end this post on a happy note, but there is none when it comes to this walk down memory lane. I am astounded that we could see so many 'experts' and yet never once have we had this very simple problem identified. It adds to the feeling that I am playing a mad game of catch-up; learning all the things that I need to know to help Juliana but sometimes not learning them until it's too late.

Friday, March 2, 2012

The First Year

I once asked David to refrain from making comments about Juliana's age. Though he made these comments in a positive light it was just too much for me to be reminded of how old she was. This was before we had a diagnosis and comments about her age seemed to be a cruel reminder that something was wrong.

Today is Juliana's birthday and while I can't say that I am incredibly excited about it (probably because I'm a little jaded when it comes to such things) I can say that I don't have any sadness over it. This is a huge sign of my own healing as we've finally reached a new normal.

What I am excited about is closing this chapter of our lives. I am not sure that many people really understand what the first part of Juliana's life was like; there are only a few people who I think really "get it." So how to describe it?

Terrifying.

Horrifying.

Loneliness.

Helplessness.

Darkness. 

This really has nothing to do with my own post-partum depression which just added another layer of helplessness and darkness on top of an already very difficult situation. Juliana was just so, so sick and there were no answers. To have to continually comfort a baby who is in continuous pain is a hard path to walk. I absolutely dreaded feeding her because it hurt her so much. She used to cry and cry until she just completely wore herself out and would pass out in my arms. In those early months she had very few happy awake times.

I remember holding her while she was hooked up to the pump and screaming; praying for God's mercy. Not long after that GAPS found us.

To fully close this chapter, I want to go back to my pregnancy with Juliana. When I had an anatomy scan as a part of routine prenatal care I was told that she had a two vessel cord, but that this could be just a normal variant. Later I had several visits with a perinatologist. I sought out these visits because I wanted to make sure that Juliana did not have a condition that would be incompatible with life outside the womb. The doctor told me that while Juliana looked good, he couldn't make any guarantee that she didn't have a chromosomal condition such as Down syndrome. My thought at the time was "ok, no big deal." That was ignorant. I don't mean at all to devalue people who aren't perfectly healthy. But it is a big deal to have a child who has major health problems such as those usually associated with chromosomal disorders. It is a big deal to have major developmental delays. And then we had an extra layer on top: it is a big deal to have a child who can't safely eat most foods. It is a huge, huge deal to not be able to feed your own child.

Sometimes I see people say that they wouldn't change anything about their child with Kabuki syndrome or Down syndrome. That's still hard for me to understand. If I could turn off Kabuki, I would do it in a heartbeat. But I can't deny that Juliana has changed our lives for the better. Life is certainly much more challenging than it would be otherwise but it contains a quality that it didn't contain before... something much deeper and richer. I wouldn't change that.

This first year has been hard - probably (hopefully) the hardest year we'll have. We still have a long way to go and so much work to be done, but we are finally out of crisis mode. I'm told that things will continue to get better but that there will always be something new popping up - a new specialist to consult with, a new device to pay for, new paperwork to file. New worries. New joy, I hope. I no longer fear what will come.

My heartfelt thanks to:

David. He thinks that he is not good at comforting but time and time again he proves that he is. He makes baby food. He is supportive of the crazy things that I want to do.

Calvin. He's always been an inspiration to keep going and to find a balance. I couldn't have picked a better big brother for Juliana.

My mom. She always asks if I need anything. I don't know what I would have done without her this past year.

Becca. Although she lives in Boston she finds ways to be here on a semi-regular basis. She is like a second mother to both of my kids. My only complaint is that she doesn't live closer.

Thank you to everyone who has prayed for us. Thank you to all the GAPS and special needs moms out there who are sharing this journey with us.