PT: Week 13, Dunno

I’m not going to lie, it has been a month since this appointment, I am way behind on blogging (thanks to a fun vacation), and I cannot for the life of me remember anything spectacular that we did at this session.  I’m sure we worked on the same stuff we always do. :)

Also, tomorrow Susan from Help Me Grow will come and fill out new paper work for the next 6 months and we will go visit Jennifer at the Regional Infant Hearing Program.  We will work on the same sounds and Averi will occasionally correctly pick the toy to go with its associating sound.  I’m sure it will be great fun. =P

Little Caterpillar

I took Averi in for another follow-up Audiology appointment today.  They have us return every so often to see if there is still no hearing in her right ear and to make sure that the hearing in her left ear is staying normal.

They started with the usual tests for fluid behind the ear drum and a stimulatory reaction to sound.  Both of these are done quickly with just a tube stuck in each ear.  Then they had me take her to the sound booth.  The last time she was in there she screamed the entire time so I was a little skeptical.

This time, however, they put tubes in her ears instead of just using the speakers.  She looked so cute!  The tubes went out and around to clip on the back of her shirt so they looked just like caterpillar antenna.  I wanted to take a picture to bad.

She did really well responding to the sound on her left ear by looking up and trying to figure out where it came from.  When they started doing her right ear she got bored and fidgety because she couldn’t hear anything.  When she started crying I figured we were done but then I tried sitting on the floor in front of her instead of having her on my lap.  She liked that much better and I was able to keep her occupied for several more tests on both ears.

The results were the same.  No response on the right ear.  She responded to the lady making ling sounds on the left ear, but not really to the machines beeping sounds.  Apparently that is pretty normal in kiddos her age.

I asked them about getting a hearing aid for her right ear to keep the nerve stimulated like Jennifer from the Regional Infant Hearing Program told me.  They said that I need an audiology exam (check) and a prescription from an ENT to get a hearing aid, so they set up an appointment for us to meet with the Hearing Clinic Team.  Hopefully they will have some good ideas for us.

OT: Week 22, Consecutive Swallows

This week has been SO much better!  Although I won’t be completely sane until the G-Tube is gone, only feeding for 15 minutes at a time has been a big improvement.  I find myself feeding her more often because I know it’s not going to take up a whole hour of my day.  It’s been like night and day from last weeks frustrations!

Keeping track of what she’s eating has also been eye-opening.  She can put down a whole jar of baby food in one 15 minute session, depending on what it is of course.  I have also been writing down her calorie intake and proven to myself that she is taking about half of her nutrition orally.  So, I will continue to ignore GI and reduce the amount of formula she is getting.

Frances said Averi is getting old enough that we should be able to start introducing more solid foods.  She opened up a container of cooked apples and offered some chopped up pieces to Averi.  She did alright with the first few but then she started gagging on them so Frances tried mixing them with applesauce.  By then Averi was turned off and didn’t want to eat anything.

So we moved on to the bottle.  I didn’t offer a bottle to her all week so she had a nice break.  Apparently she liked it because she did awesome!  She started taking 2-3 consecutive swallows before breaking suction to regain composure.  She never does that.  She did so well that Frances gave her more and she took 2 ounces in just 15 minutes.

I don’t know what has changed but she is doing so much better.  I’m trying not to get my hopes up. :)

Me and My Big Mouth

On Tuesday I called the GI Clinic nurse to have her fax in a prescription for more Elecare. After trying to convince me to do it, she finally agreed to take care of it and asked if I needed any flavor packets. Seriously, there are flavor packets? I’m currently using strawberry syrup so of course I’d like some flavor packets.

As she was getting off the phone I stopped her for just one more question. I should have left my big mouth shut. Recently, since we have been focusing more on spoon feeding at OT, I decided to start keeping track of the calories Averi eats (sad, I know). However many calories she eats orally I subtract the equivalent of that in formula from her feed so that the total calorie intake is the same as if she just had the formula (have I lost you yet?).

The other day I realized that I wasn’t replacing that liquid in her diet and started giving her water to replace the formula that I was taking out. Example: she eats 80 calories of bananas, I subtract 4 oz of formula (20 calories/ounce), she gets 2 oz of formula and 4 oz of water (to replace the formula I took out).

This all makes perfect sense to me but I wanted to check with the “professionals” to make sure I was treating the water correctly. The nurse immediately asked me if Dr. Punati knew I was replacing formula with food and explained that their philosophy was that any food she got orally was just bonus. She insisted on checking with the doctor. Good thing I didn’t tell her that I’ve already reduced the total amount of formula I’m giving her. :)

My caller ID announced at 7:30 yesterday morning that the GI Clinic was calling. I didn’t answer – I knew it wasn’t going to be good. The message the nurse left was comical. I’m pretty sure she said “NOT” at least 8 times…“Dr. Punati does NOT want you to replace the formula,” “you should NOT be subtracting any formula.” She also wanted me to get a weight check on Averi to send to them and to make sure that I called her back so she knew I got her message.

The stipulation she gave was that we could start replacing formula if Averi was taking 300 calories orally a day. I decided to add it up and she’s averaging 320 a day. I called back today to let the nurse know and she changed her tune again. She informed me that we should not do any substituting until after doing a weight check in 2 weeks. Then she flat out told me that all they care about is weight gain. Do I even have to tell you that I didn’t listen to a single word she said?

Note to self: keep your big mouth shut!

PT: Week 12, Same Old

It’s funny, Averi only tolerates sitting for a little while when we are at home, but she loves it at PT because that her resting/break position.

We worked on the same things today and Abbi also added in trying to get Averi to stand up with support on her legs. She doesn’t like to bear any weight on her legs. She is also perfecting arching her back to try to get out of things but Abbi is stronger and makes her do them anyways.

Abbi even tried sitting on the swing with Averi while holding some of her positions. Averi tolerated it a little bit better, but still wasn’t very happy about it. Abbi says that if Averi stopped fighting it so much, she could hold all the positions by herself. Abbi just holds on to make sure Averi doesn’t loose her form.

OT: Week 21, Time Yourself

Averi really didn’t make any progress on the bottle this week, despite my efforts to add strawberry and even chocolate syrup to her milk. She is getting better at eating with a spoon and I feel like she is almost as coordinated as she used to be.

This weekend my mind took a break and I forgot to pack her formula when we went on an overnight trip to our neighbor’s lake house. When we ran out of formula Dan volunteered to run to the store and get some until I explained that her formula requires a prescription and comes in the mail. We simply had to offer her as much baby food as she would take and call it good. She ate a whole jar which hasn’t happened in a long time.

Then I forgot her milk again when we went to church yesterday. We were 2 ½ hours late giving it to her and she was actually acting hungry and fussy. I was really excited to offer her a bottle, in hopes that she would be more motivated to eat. Don’t get your hopes up, it was still a battle.

Today, Frances decided to spoon feed the strawberry milk to Averi because she simply did not want the bottle. Surprisingly she ate it pretty well and we were able to get 2 ounces in her. Why is it that she will eat it from a spoon but not from a bottle?

Frances came up with a new game plan for me, which I really needed. I am just going to spoon feed Averi for 15 minutes at each feed and then write down how much she eats. Depending on if she starts eating more in the same amount of time or not, we will be able to tell if she is getting worn out after a certain amount of time or just reaches a certain amount of full and then decides to stop.

We also tried putting baby food in a sippy lid and she didn’t do any better then with the bottle. It’s frustrating because I know she’s capable of drinking from a bottle after all the consecutive swallows she took at the swallow study, but she just chooses not to be interested. Hopefully timing myself will lead to a more peaceful week.

Celebrate What?

Today is the one year anniversary of when Averi was finally allowed to come home with her family after spending a week at her birth hospital and another 40 days at the Children’s Hospital. This is a day of celebration, right? Well it was, at least until about lunch time.

As I sat there yet again trying to get Averi to drink just one ounce from her bottle, she insisted on screaming, arching her back, and pushing the bottle away. I finally just had enough. I sat her in her chair, looked her in the face, and screamed. (Yes, to all of you who have these crazy ideas that I am handling things so well, here is my proof otherwise.)

I had to walk away because I was so frustrated, so I threw the bottle in the sink and melted into tears on my kitchen floor. Then, being the person that I am, I got up, washed the dishes, and made lunch for Kaili. Someone has to do it and apparently I have no idea how to leave a task anything but 100% done, all the time.

I cried because I felt guilty for yelling at my 1 year old, but also because I’m just so tired. I don’t mind working on something insistently, but I’d be lying if I said I wasn’t waiting for some proof of my efforts. Averi has been home for a year now and I’ve been working with her at OT for 6 months and I’m still trying to coax one little ounce of milk into her.

I’m tired of spending a fourth of my day putting food into her. I’m tired of moving backwards instead of forwards. I’m tired of feeling like my life is a waste of time. I’m tired of feeling guilty for not spending more time with Kaili or more play time with Averi. I’m tired of willingly giving so much of myself to get nothing in return. I’m tired of pretending to be strong.

A year ago today Averi came home from the hospital, and what do we really have to show for it? I want so much more for her…but most of all I just want this stupid G-tube to go away.