OT: Week 28, Is That Snot?

I finally decided to succumb to the fact that we can no longer use cereal to thicken Averi’s milk and called my friend Vicki to find out how she uses xanthan gum to make her own thickener.  (For a while we were using Simply Thick, which Frances was supplying for us at no cost because we were using so little, but it is extremely expensive.  The main ingredient in it is xanthan gum, which you can buy at health foods stores at a cheaper price and then mix with water.)

The xanthan gum powder doesn’t mix with the water very well so I followed her instructions to mix it in the blender.  Well…apparently I mixed it a little too long because it looked like someone blew their nose in a tissue and then I ran up and scooped it into a bottle.  (I held this spoon for the picture for over a minute.)

When I showed up at OT this morning offering my newest solution, Frances laughed out loud and then gently tried to tell me that it was too thick for Averi to get through a straw until I informed her that it still had to be mixed with the formula.

I tried thickener a few weeks ago and it ended in tears so I was hoping Frances would have a great solution for getting Averi to drink it.  To everyone’s amazement, she took it with no hesitations.

Of course, in true Averi fashion, she has already lost some coordination in the last 2 weeks so it took her over 30 minutes to drink 4 ounces.  My goal for this week is to return to the 15 minute rule and see how much I can get her to drink.

It’s not the ideal situation but it is definitely better than I had anticipated.  Maybe snot is the answer to more things…

PT: Week 18, A Good Day

Today was one of those days when you leave PT feeling like you’re actually getting somewhere and not just wasting your time and money (completely opposite from last weeks’ feelings).  There was still crying involved, but nearly as much as usual (maybe it had something to do with the twin boys not being on the mat next to us doing PT).

Averi seems to have finally wrapped her head around what we are trying to do at PT.  That doesn’t mean she likes it, or even that she tries to do it and cooperate, but it does mean that she is getting stronger.

A few days ago I tried to get Averi into four-point and she didn’t fight me on it.  Maybe it was because we were at home and more comfortable, but whatever the reason, she stayed there.  I rocked her back and forth for a while and then I let go…and she stayed there!  I couldn’t believe it.

After that I, I started trying several times a day.  Not only will she hold herself up on all fours all by herself, but if I hold a book in front of her and read it she will even hold her head up instead of resting it on the floor.  I decided to start taking books with us to PT.

She even managed to do well for Abbi today as well.  She did well in four-point, kneeling and even standing.  I don’t know where it came from, but I hope it stays!

Who Said What?

After more than a week, I finally heard back from both GI and the Allergy Clinic about Averi latest situation with food allergies.  It was not productive.

The Allergy Clinic let me know that her reaction to strawberry was not clinically significant and I can continue feeding them to her.  I should keep an eye on it and let them know if there is a reaction (like hives or rashes), but there won’t be a reaction, but if there is I should let them know.  Great, I feel very confident that she will be fine.

Then a nurse called me from the GI Clinic to let me know that I do NOT need to take her off of cereals.  What?  So I asked her what I should be doing about the mucus in her poop.  Since she was a different nurse than the one I talked to last week and has never even met Averi, she told me just to keep and eye on it.  Really?

I decided I wanted to talk to the doctor in person and called to make an appointment…in mid October.  Great, so I’ll just “keep and eye on things” until then.

(My thoughts exactly Averi!)

Since I had two doctors telling me two different things, I decided to be the advocate.  We have already been off cereals for a week, and it takes 2 weeks to see any improvements, so I am going to continue eliminating them to see if she gets any better.  Here’s to nothing!

OT: Week 27, Apples Anyone?

After our visit to the Allergy Clinic this week, it was quite fun trying to find things for Averi to eat.  She screamed bloody murder when I tied to give her formula and apple juice mixed with thickener and we could only get it in her one Dan mixed in a large amount of strawberry syrup (which, oddly enough, contains no strawberry).  I finally resorted to putting baby food in the honey bear so that she could continue to get practice with the straw.  Just think of it as a V8 and call it good, right?

Finger feeding was interesting as well since the fruit leathers I bought and her puffs have strawberry or rice in them.  I did give her some cut up pear slices and she loved them – so much, in fact, that she bite her tongue enough for it to bleed and didn’t even cry or stop shoving them in her mouth.

I left the house this morning not quite sure what we were going to do at OT since we’re kind of at a stand still, and once I explained the situation to Frances, she wondered the same thing.  We sat and talked through ideas for a while and then Frances decided to try spoon feeding some chicken and applesauce since those are two foods Averi can actually have.

I have never seen this girl eat so much in my life.  She ate a whole jar of chicken and gravy, a whole package of applesauce, some freeze dried apples, and was still looking for more.  So Frances gave her another third of chicken and of applesauce until it was time to go.  It was amazing!

The best solution that Frances could come up with for now is to take apples and chicken and present them to Averi in as many ways as I can – i.e. applesauce, apple slices in mesh bag, dried apples, cooked apples, apples mixed with other veggies, etc.  This way she can still get oral stimulation and practice while we are sorting out this allergy thing.

I’m not quite as pumped as I was upon leaving OT last week, but I have to admit that things don’t look nearly as bad as they did after the allergy appointment…considering.  Now if I could just figure out how to make this thickener and get her to drink it we would be set.

Buddy Walk

On October 3, 2010 Dan, Kaili, Averi, and I are walking in the National Down Syndrome Society’s Buddy Walk under the team name ‘Can’t Keep Me DOWN.’  I am so excited for this opportunity to improve the lives of the over 400,000 people nationwide with Down Syndrome, including our precious little Averi.

Life doesn’t always turn out the way you thought it would, and it may not always be a walk in the park, but you’d be surprised by the things that end up making you happy and fulfilling you.  It’s amazing that something I knew so little about just over a year ago is now a central part of my life.

When Averi was diagnosed with Down Syndrome I knew that our lives would be changed forever…and they have.  We have been blessed with one of the happiest, most content babies I have ever met, with an older sister that loves her just the way she is.  We have had, and still have, our struggles, but they make the good moments that much more special.

Because this journey with Down Syndrome is one that we will embrace for the rest of our lives, I am very passionate about supporting the cause to make the lives of those with DS the best they can be. 

In preparation for the Buddy Walk, we are accepting donations to support the cause of the National Down Syndrome Society and their desire to fulfill the lives of many people who are taking the same journey as us.  I am not the fundraiser type person but this is something I truly believe in and I am hoping that our friends and family will be able to help.

If you would like to make a contribution to our team, even just $5, it would be greatly appreciated.  We love all of you and are so grateful for all of your support, thoughts, and prayers…please keep them coming because our journey is nowhere near being over!

To Donate:

-          Go to columbusbuddywalk.org

-          Click on ‘Donate’

-          Click on ‘To a Team’

-          Scroll down and click on our team

‘Can’t Keep Me DOWN’

-          Welcome to our page!

-          Click on the box that reads

‘Donate To: Can’t Keep Me DOWN’

-          Thank you so much for your contribution!

PT: Week 17, Stop Fighting It

I wasn’t expecting things to go well at PT today.  Lately Averi has been fighting it more than ever.  Yesterday the Early Intervention Specialist came and Averi just screamed if we tried to get her to do anything.

I finally came to a conclusion – Averi’a arms are weak and that is why she refused to use them.  She sleeps on her stomach almost all the time now and if it hurt or felt funny because of the Mickey or her heart surgery she would change positions.  It is all about her arms.

I told Abbi my observations and she totally agreed.  Averi can sit up from her back when she’s on the exercise ball so we know she has the core strength, she just doesn’t want to use her arm to push the rest of the way up.  The EIS also told me that I need to get Averi to push up and down because just leaning on her arms won’t strengthen them.  Abbi and I decided that if we can get her to just lean on her arms we are making progress, so that will be my goal for now.

We also worked on getting Averi to stand.  She likes to lean back on whoever is holding her to make it easier so we really have to get her to lean forward.  We also put her in 4-point to work the arms again.  She wasn’t happy but she didn’t scream nearly as much as I thought she would.

Allergy Clinic - Finally

This afternoon we headed over to the Allergy Clinic after being referred to them 3 months ago.  You’d think I would have learned from previous experiences but I have now officially learned that I should never go to an appointment with high expectations…because I will always be disappointed.

I didn’t think she’d have to wear a gown again any time soon, but as long as it’s not surgery related I’m cool with it (plus she looked really cute).  After lots of waiting, the “doctor” came in to see us (I say doctor because I was told that there were residents working with the doctor and as you will find out later I never figured out who the presiding doctor was).  I explained her entire food allergy history and that she has conveniently been having mucousy stools (and one bloody one) for the past 2 weeks.

They decided to do 3 different skin tests.  A skin test consists of a thing with eight prickly prongs that is dipped into 8 different allergy oils and then pushed onto your back, making little pricks in the process.  It has to sit for 15 minutes and then the doctor comes back to see if there were any reactions.

Averi screamed when they did this and I couldn’t figure out how to console her because I couldn’t pat on her back.  She finally calmed down and the doctor came back to read the results.  I was so excited because we were finally going to know what foods bother her and get to the bottom of everything once and for all…

Nothing!  Not even the control histamine had flared up (second one down on the left for tray #1).  The only thing that even sort of reacted was the strawberry (top one on the left for tray #9).  Tray #3 was egg, cow’s milk, wheat, soy, peanut, cashew, shrimp, and oat, and we got NOTHING!

This was the part when a different “doctor” (they all looked young, inexperienced, and kept leaving to consult with the other “doctors”) explained to me that food protein intolerances show up as the mucousy stool (already knew that from her milk protein intolerance) and that there are absolutely no tests for protein intolerances – other than elimination diets.

They told me that oat protein can be a problem and that we should eliminate it for the next week to see if her stools get better.  We thicken all of her food and formula with oatmeal so I asked if I could use rice instead.  They informed me that rice protein can also be problematic and that I should not use any cereals.  So how exactly am I supposed to feed my daughter?

Then it got even better.  They informed me that if eliminating the oat doesn’t have good results we will have to put her on just Elecare tube feeds for several weeks and then add in one food a week.  I honestly wanted to cry.  Averi did so well at OT this morning and is finally making visible progress after 8 months of OT and we might have to completely stop oral feeds?  Shame on me for getting excited that something good was happening, for thinking that we were out of the “one step forward, 7/8 of a step back” phase.

I was so upset that it wasn’t until I got home that I realized they never told me if we should stop feeding strawberries to Averi.  Just to rub salt in my wounds, the fruit leather that I just bought this morning has strawberry in it.  I will be calling GI to get a more professional opinion as to what we should do (and you know that means I’m desperate).

OT: Week 26, Fruit Leather

Averi has just all of a sudden (over the last month or so) started doing really well with eating.  Since figuring out her pincer grasp and how to use it to get food to her mouth she has been loving her puffs.  As long as we only giver her 2 or 3 at a time she does really well getting them to her mouth.  (I think it helped getting peer pressure from her 10 month old cousin this last week too.)

Drinking with the honey bear is still going really well too.  Every once in a while we can get her to eat/drink all of the calories she needs for the day and we only have to use the pump to give her water.  I feel like we might actually be getting closer to getting rid of the G-Tube in the distant future.

At OT today we decided to work with Averi some more on self-feeding.  First Frances gave her a fruit leather to see if she liked being able to hold onto the food while she chewed on it.  She tore it to pieces!  It was so funny.  Frances was a little worried that it might be too flat because we occasionally saw it just sitting on her tongue, but she managed to eat all of it without gagging at all.

Then we got out some peaches and cut them into little chunks (she still needs her food pretty small).  Frances out a piece in Averi’s cheek and she just started chewing away.  Right now she mostly chews up and down (which just mashes the food) but every once in a while she would us a grinding motion (which actually breaks the food up).  I think it helps that she now has 3 molars!  (You have no idea what I went through to get this picture, but there are her two blurry upper molars.)

By the end of the session, Averi was getting mad at us if we tried to feed her even though the peaches were really slippery and she had a hard time picking them up.  We were laughing because when I first sat her down I had to bring her legs together in front of her, but once the peaches were on the floor in front of her she no longer had any problem keeping her legs together.

She did so well that Frances gave her another fruit leather and she once again chowed down on it.  I left the session really pumped and went to the store to buy more fruit leathers and cans of peaches and oranges to cut up for her to eat.  Can you believe that she is actually feeding herself, little as it might be?  Who would have thought?

Hearing Clinic

We finally had our Hearing Clinic appointment today to find out if a hearing aid would be beneficial for Averi.  It didn’t seem like it was going to be a very promising appointment when the first thing Dr. Kang said was that Averi hasn’t had any audiology exams with the same conclusions and he didn’t know what the actually hearing loss was.

Seriously?  She can’t hear anything from her right ear.  How confusing is that?

He examined her ears with the microscope and then sent us to audiology for yet another exam.  Not knowing that we would end up here, I had brought Kaili with me (which usually isn’t allowed).  She was not at all excited about sitting in the room with a stranger while Averi and I went into the sound booth.  After running several tests on her ears, they decided that their results were the same as the last exam – no response in the right ear.

We then went back to Dr. Kang who explained that there is no reason to put a hearing aid on her right ear to stimulate the nerve because the nerve is completely damaged.  The next step is to put a CROS hearing aid on her to take the sound from her bad ear and put it into her good ear.

When I asked about it he said that it is a head band that goes around her head with a piece on it that sits behind the ear.  I’m not going to lie – my first thought was that she was going to look really silly (it’s horrible, I know).  My second thought was how the heck we were going to keep it on her head without her ripping it off every 5 minutes.

Starting to be wary, I asked about the effectiveness.  It will improve her hearing from about 80-90% to 90-95%.  Now I’m even more skeptical.  I talked to several other specialist (speech, social worker, etc.) and then made an appointment to have Averi fitted for a trial hearing aid.

I talked to Dan about it when I got home and we decided that now isn’t the right time to do this whole hearing aid thing.  I don’t think she will keep it on and most communication with her right now is up close.  However, it is good to know that we will have options in the future if problems arise once she starts school and has to hear more things from a distance.  Until then, she better start growing some hair so I can do fun things with it before it’s covered up by this hearing contraption. :)

OT: Week 25, Pincer Grasp

Averi is still doing awesome with the honey bear, although she has gotten a little bit sloppy with it.  It’s probably due to the slight cold she has (which hasn’t turned into croup yet…knock on wood).  Frances said to pull the straw out whenever she starts dripping, even if it means she only takes one swallow at a time, so that she’ll stop thrusting her tongue forward.

Averi took a whole feed from the bear with plenty of time to spare so Frances got out the puffs.  After a couple of tries, for whatever reason, Averi starting picking them up with her thumb and finger.  Then, to top things off, she put it in her mouth.  I have never seen her put food in her mouth all by herself before.  She will hold the food filled mesh bag up to her mouth but that’s as close as it gets.

She didn’t just do it once either, she repeatedly picked up the puffs and put them in her mouth.  Granted they didn’t usually stay in there long enough for her to swallow them, but it was very exciting.

When I mentioned to Frances that I have no idea what a baby Averi’s age should be eating, she went and printed out a nutrition sheet for me.  Come to find out, not only is she eating almost everything orally now (except liquids) but she is getting a balanced diet, even if it is all purees and oatmeal.

We will miss next week because we will be at the beach but Frances told us to continue working on her pincer grasp and getting food to her mouth.  Maybe one day she won’t only eat but feed herself!