Wednesday, June 30, 2010

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.

Monday, June 28, 2010

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. :)

Thursday, June 24, 2010

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!

Wednesday, June 23, 2010

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.

Monday, June 21, 2010

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.

Thursday, June 17, 2010

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.

Wednesday, June 16, 2010

PT: Week 11, Muscle Arms

Abbi continued to work on the same things today:
• Situps on the ball
• Getting to sit from laying down (rolling her onto her side and tilting her hips so that she has to use her arm and core muscles to sit up)
• Sitting to the side (one leg in front and one behind with both hands supporting her in front)
• Supporting herself on her hands and knees

Averi’s arms are getting much stronger. When we first started PT she would not bear any weight on them but today she was holding herself up on her hands and knees – Abbi just had to push back on her shoulders to keep her from using her super strong legs to push forward onto her face.

Her favorite thing to do today was cry until she gagged herself. If she would spend less time arching her back and more time just letting Abbi position her, it would be a lot easier and go a lot faster. Too bad we can’t reason with babies. :)

Tuesday, June 15, 2010

OT: Week 20, Little Bites

We went to OT today so that we could see the results of the swallow study before working on new stuff. I updated Frances on yesterday’s conclusions and we got out a bottle and got to work.

Averi is still not really interested in the bottle. She kept chewing on the nipple until Frances decided to spoon feed the milk to her. She did a little bit better eating it that way but still wasn’t really excited about it.

I told Frances about my concern that Averi doesn’t tolerate food with chunks and she got out some mandarin oranges. She chopped them into tiny pieces and put them in Averi’s cheek so that she could manipulate them before swallowing. Averi’s tongue went crazy! It was hysterical. Frances even shared her lunch banana so that we could mush it up and feed it to Averi as well.

Averi seems to not be able to find the food in her mouth so Frances told me to put her food in the freezer for an hour so that she can feel the cold and be more aware of it. I can also add lemon juice to her food to help her be more aware of it or even give her a pickle to chew on. Don’t worry, I’ll take pictures.

Monday, June 14, 2010

Not Much Help

Today was #4 of Averi’s swallow studies, but before that we went to see GI to have her weighed. I was curious to see how heavy she was because I promised myself that I would give her the 5 feeds a day for the last week and a half as I was told. I kid you not, she gained 12 ounces (almost a whole pound), moved up to 35%, and it shows!

The first thing I told the doctor when she walked in was that Averi cannot handle having feeds every 3 hours. She has spent the last week refluxing to the point of milk coming out her nose and yesterday she even projectile vomited on Dan during church, all of which is accompanied by screaming and back arching. Dr. Punati changed her back to 4 feeds a day but upped her formula from 20 calories per ounce to 30 (less fluid, same calorie intake).

She also explained that the dairy protein intolerance can be outgrown but usually not until around 2 years of age. We will schedule an endoscopy at 18 months to make sure that everything is healed before trying to introduce dairy again.

This was when I learned how uptight the Neonatal Clinic was and how laidback GI is. Dr. Punati looked at the growth chart (not even a Downs chart), saw that Averi had gained weight, and said she would see us back in 3 months. We went every 3-4 weeks to the Neonatal Clinic. And that was it.


We then headed over to Fluoroscopy for the swallow study. The main purpose of going back again was to see if Averi is aspirating because she tends to sound wet after eating orally. They tested all three thicknesses (thin, nectar, honey) and there was no aspiration.

Throughout the whole thing I got the distinct feeling that the people administering it didn’t think Averi needed to be there. They kept mentioning that she didn’t need to come back anymore and wouldn’t listen to what I was telling them about what Averi can and cannot handle.

I told them that Averi can only handle thin liquids with a slow flow nipple so the lady looked at me and decided that Averi is old enough to use a faster flow and used that instead. Of course she made a mess of it and didn’t do any consecutive swallows.

Then they tried the honey thickness, which is what we usually use, and couldn’t get her interested in it so they asked me to feed her. She went right to it and did at least 15 consecutive swallows. (It was fun to feed her but I was bummed that I didn’t get to really see her swallow on the video screen.)

(She was more interested in the seat belt than the milk.)

In the end they told me to try using thin liquids because she can “handle” it without aspirating and it’s never the goal to use thickeners if we don’t have to. I asked them why it mattered if we use thickeners and they said that she has to work harder to get the thicker milk out and therefore tires faster and won’t eat as much. So basically, they would rather she try to drink thin liquids that she can’t control well as opposed to “getting tired” and at least swallowing a few ounces.

On top of that, they used Nesquik to flavor her barium and I was really excited to get some and try using it at home. I double checked the ingredients when I got home and it has both milk and soy in it. They specifically clarified with me that she had allergies to both. I was not impressed with the study and we didn’t really learn anything new.

Here's her one swallow I was able to capture while they were feeding her the thin liquids:

video


I came home tonight, sat down with a calculator and all the information we have, and did a lot of thinking. If we aren’t going back to GI for 3 months, then that means I can finally have more say so in what we feed Averi. I have made my own feeding schedule and we are going to do weight checks every 2 weeks to make sure she is following the growth curve. Hopefully things get better from here (not that they can really get much worse feeding wise.)

Friday, June 11, 2010

Not Spoken

I know this blog is mostly a list of all the places we go and the people we see but sometimes I just need a place to release my emotions. I have fought with myself about doing so publicly because I don’t want people to think that I am looking for pity or that I am upset with how our lives have been changed.

I simply want this to be an accurate accounting of our journey through life with Averi. So, after much debate, you are going to get it all. Hopefully this will be a place where others can find empathy and peace with the knowledge that they are not the only ones out there who have thought the same things.
There are often things on my mind that would be totally inappropriate to say out loud, especially to someone who doesn’t have a child with Down Syndrome. Sometimes I sit and examine Averi while she sleeps and wonder what she would look like if she didn’t have DS.

I know she is truly beautiful but she would be different without it. I wonder if I would be able to recognize her. Would her eyes still show so much emotion? Would she still look so cuddly? Would I think she was more beautiful, or just different? What would her mannerisms be like?

It’s not something she has, like a disease, it’s who she is, so I cannot separate the two and make her a person without it.
She is still so small and sometimes it seems like her life is creeping by, but that doesn’t stop me from wondering where her life will take her. I don’t worry about it quite as much anymore, but it bothers me that I might have to bury one of my children. That’s not fair. No one should ever have to bury their child, no matter how old they are. She’s had a rough start but I think she will live a long and happy life. I just don’t know what the definition of “long” is.
The other day at church I was filling out a survey about myself. One of the questions was to list what I want to do before I die. Without even hesitating I started to write “see all of my children be married in the LDS temple.” I stopped half way through because I felt so stupid. Of course that won’t happen.

It is my hope that Averi will one day have the desire to be baptized into the church and then to enter the temple but I don’t know that she will ever get married. Ever since I was little I have wanted to be married in the temple, which I did, and then to have the same for all of my children. Sometimes it is really hard to accept that life isn’t a fairy tale and it’s not going to end up the way you always planned it would.

I was so taken back by the situation that I wrote something dumb like “care less what other’s think of me” which isn’t even something you physically do, like the question was looking for. Just for the record, life is different, but it still brings happiness…I just have to get used to the new scenery.

Thursday, June 10, 2010

Infant Hearing

We met with Jennifer today to continue working on Averi’s hearing. After playing with each of the Ling Sounds she tried holding up two toys and making the sound for one of them to see if Averi would look at the associated toy. Not so much. She mostly looked at Jennifer since that’s where the sound was coming from.


She also tried moving to the other side of the room to bang on the drum, ring the cow bell, and shake the maraca to see if Averi would turn toward the sound from a distance. She immediately looked at Jennifer for the drum and bell but had a slower reaction time for the maraca, probably because it has the softest/highest sound.

The last thing she did was introduce a toy cow, dog, and duck, with accompanying animal sounds. Averi was pretty unimpressed by them by them but I think she was getting tired.

We are going to keep watching her Signing Times videos and see if we can get her to learn any of the signs. I also asked Jennifer how to sign names and she said that you can sign the first letter with an accompanying characteristic. I’ll have to think of something fun to do for Kaili so we can start teaching it to Averi.

Wednesday, June 9, 2010

PT: Week 10, Screaming = Tolerating

Averi did a little bit better this week with getting in and out of sit. By better I mean that she allowed Abbi to put her into positions without flailing backwards. This does not mean that she was at all having fun or that she did not scream the entire time. Abbi said she tolerated it much better than last week.


Her core is getting much stronger. For the last several weeks Abbi has mentioned how Averi seems to be advancing quite well. She is better at doing sit-ups on the ball and simply sitting without being touched. Her arms are getting stronger as well. She will hold herself up from her tummy with straight arms for at least a minute if Abbi supports her knees and legs.

For having Ds and tending toward low muscle tone, I have had several people tell me lately how good Averi’s tone is. She keeps her tongue in her mouth, even when she’s sleeping, and her legs aren’t too froggy. It’s the little things.

Tuesday, June 8, 2010

Love Bugs

The Early Intervention, Help Me Grow program started a play group called Love Bugs for all children who receive services. The building that it is run out of is 30 minutes away but I decided to give it a try last month.

It was nice having an excuse to get out of the house for something fun but I didn’t really feel a connection with any of the other moms there. I think I am just used to our DS Support Group where there is one thing tying us all together. When I left, I promised myself that I would come back this month before choosing to forget about it. I really want to enjoy it because Ronnie, the lady in charge of it, is so sweet.

Today’s visit was better, but that might have something to do with me meeting a mom with a son who has DS. His name is Nicholas, he is only one month younger than Averi, and they live in the same town as us. Come to find out, their information, along with another family’s, is on my fridge. Susan, our EI, gave it to me in hopes that we would get together. I promised myself that I would set up a play date for all three families. We’ll see how long it takes for that to happen.
The funniest thing about meeting Lisa, the mom, is that she didn’t realize at first that Averi has DS. She was going to ask me why we were receiving services when Susan mentioned to her that I was the mom she had told her about. She has a son with DS and didn’t see it in Averi.

Maybe it’s just because I know, but I see it in her all the time. I also find myself looking for other people with DS, kind of like how I looked for other pregnant moms when I was pregnant. I always assumed that people knew as soon as they saw Averi, but now it makes me wonder how many people have seen her and not recognized the challenge she has been given.

Monday, June 7, 2010

OT: Week 19, That Tastes like Crap

I have to admit that I have become a bit of a nipple hoarder. Everywhere I go I am on the look out for bottle nipples that might provide some sort of improvement for Averi’s eating. This week I found a wide based one at Goodwill and it is actually working pretty well.

Since I haven’t tried feeding Averi orally since we started the Elecare on Friday, I was curious to see how she responded to it today. My expectations were met (which is bad since they weren’t very optimistic) and she strongly disliked the flavor. Who can blame her? If she preferred prunes in her breastmilk why would she like formula? (Honestly, the smell of the stuff makes me want to puke.)

Using my Goodwill nipple, Frances tried to coax Averi into drinking the formula. Every time she started sucking, she immediately spit it back out. We even tried doubling the amount of prunes added to it but to no avail.

Frances decided to try spoon feeding again to see if Averi would respond any better. She downed over half a jar of bananas before it was time to leave. We talked about trying to add higher calorie foods into her diet, since she does so well with purees, so that we can decrease the amount of formula she is receiving.

When I tried to feed Averi this afternoon, I was determined to find something that would make her formula more appetizing. First I added Kool-aid powder, but the only thing it succeeded at was turning her mouth blue. She still wanted nothing to do with it. Then I tried adding banana pudding powder to the milk. She still wasn’t super excited about it but I was finally able to coax a whole ounce into her. This is going to be a lot of fun, I can tell.

Saturday, June 5, 2010

This Sucks!

Prepare yourself because today’s Nutrition visit was one of the most frustrating appointments we have ever had…EVER! (I will insert some happy pictures and lists for the sake of sanity.) We were there over 2 hours and I left feeling like we had just gone backwards more than 2 months.

To start the visit off, I caught Andala, the nutritionist, up on everything I have been working on with Averi:
• The nighttime continuous feed is finally gone! I made this goal after waking up the day after Averi’s birthday to find the cord wrapped around her neck FOUR times, tight enough to leave red markings for several days. It was a long process that involved adding a feed and slowly increasing the amount of each feed, but it finally happened.
• Averi isn’t really eating much food orally because I have been so adamant about increasing her feeds to loose the continuous feed and her tummy is constantly being stretched to its max.
• My last tub of breastmilk will be used by the end of the day today (sad, I know) so we need to decide on what will replace it.

She decided that we cannot use just whole milk since the majority of her nutrition is coming from milk right now and maybe we should start using Pediasure. I was excited to try something with more flavor, since we have to prune all of Averi’s milk, until I realized that Pediasure has soy in it. Andala assured me that soy oil wouldn’t affect her (it has in the past) and continued to give me instructions on how to dilute it to the correct calories per ounce.

Then she pulled up Averi’s growth chart…and everything stopped. Apparently Averi’s growth has plateaued long enough to cause alarm and she immediately left to ask the doctor to come in and examine her {eyes rolling}.
Note: Here is my take on things – Yes her growth hasn’t really increased much in the last several months but that is only alarming if you only look at the last several months. She started out at 25% and she is currently at 25%. Do you remember the time that her skin was so tight she couldn’t move? Do you not see my 3 year old sitting here who has never been on a growth chart ever? I don’t make big kids. Let’s just focus on her following this curve instead of putting her back where she was miserable.

Then the doctor came in and informed me that we can no longer continue coming to the Neonatal Clinic, for nutrition care or otherwise, because we are being seen at the DS Clinic (which a big joke and not really helpful at all). Teresa, the NP there, has been hiding us for 7 months because she likes us, but we have now been found and cannot return. Instead we will have to receive nutritional care at the GI Clinic, so they will be calling Dr. Punati, the GI doctor, to see how she wants to handle plumping Averi up.
This is when my blood really started to boil. The doctor returned with these messages from GI:
• Averi cannot get advice from the GI nutritionist until she has had an appointment with both the GI doctor and the GI nutritionist present.
• STOP all dairy!!! Averi has a dairy protein intolerance.
• Start feeding her the hypoallergenic Elecare – you remember, the $50 for 3 days formula
• Add in another whole feed each day

What? This is where I first learn that milk allergy and dairy protein intolerance are two different things, even though my daughter has had it for almost a year now. Come to find out, a protein intolerance is much more serious, is less likely to go away, and presents itself by tearing up the gut from the inside out.

Why is this not written in bold at the top of her file? All of the doctors that we see are through the same hospital and can access all her files. Why has no one taken note of this? Why have we been feeding her dairy for the last month?

Apparently GI was going to do another scope and biopsy soon to make sure that her gut had healed from when she was pooping mucusy blood and then they would have instructed us on what to do about adding dairy back in to her diet. Now we have to wait several more months for the dairy to leave her system and allow her to heal again before anything can progress further. Nice!

Also, when exactly would you like me to add in this extra feed since there is not more time in her waking hours and I refuse to plug her in at night? Oh, you want me to feed her every 3 hours instead of every 4? I’m really looking forward to it.
Don’t worry, I’m still not done. I then decide to have the doctor and NP look at Averi’s rash that has not gone away since starting her on dairy. Neither one of them had any idea what it is. They think it might look like a rash from a virus like strep, and told me to stop using anything scented on her skin just in case. Mmmm, now she can smell like formula, because the smell oozes out of her glands, and I can’t even put lotion on her to cover it up.

An appointment was set up for us to see GI in a week and a half, they told me to call if we had any problems (um, were you at the same appointment I was?), and I practically ran out the door.

Broken Pump

When I got home from that very enlightening appointment, I dumped the last of my free breastmilk into the pump bag and hooked Averi up. It beeped at me telling me there was a “Feed Error” even though the milk was going through just fine. This was just what I needed.


I told it to continue only so it could beep 3 minutes later with the same message. Long story short, I sat next to Averi and pressed continue every 3 minutes while calling Apria to ask for a new pump because I’ve changed the bag 3 times and it’s still not working.

This was all highly ironic because just yesterday they came to my house and asked if they could change out my pump so that they could maintenance my existing one. Several hours later a man showed up with a different pump and told me that the pump we use is currently out of stock. Keep in mind that he is the delivery man and has not idea how to use either pump.

Then he realized that the bags he brought did not fit into the different pump. He left to get the right bags and I convinced him to look through the broken pumps at the warehouse to see if he could find the one we were using yesterday that was working just fine.

He finally returned with our old pump and I sent him on his way. From now on I will hold on to our working pump, even it does need to be “maintained.” I am ready for today to be over!

Wednesday, June 2, 2010

PT: Week 9, What to do with Sitting

Averi is still not interested in getting in or out of sitting by herself. She prefers to sit and scream or simply fall backwards and bang her head on the ground which also leads to screaming.

Abbi decided to focus on this today by continuing to work on getting to sit like last week and teaching Averi to sit with one leg in front and one leg behind while supporting herself with her arms. This did not go over well.

She also worked on tummy time and supporting herself on her arms there as well. At one point she propped Averi up on her hands and knees while holding her feet to keep them from slipping backwards. Averi was able to support herself for a minute or two before collapsing to the mat.

Abbi says that Averi has pretty good tone for having DS but to make sure that she doesn’t go frog legged while lying on her stomach. She can’t learn to crawl if her legs are out to the side instead of behind her.

Tuesday, June 1, 2010

OT: Week 18, More Nipples

On the way to OT this morning, the pediatrician called with the results from Averi’s allergy test. They tested for all possible food allergies and all of them came back normal so we were cleared to add the whole milk back into her diet as 25% of her feed. I’m a little skeptical about there being no reaction to the soy, since there definitely isn’t any in her system, but I guess we will cross that bridge when we get to it.

Since Francis suggested using a nipple with a wider base, I decided to try a few different nipples at home this week. I might have gone a little crazy.

I found a tri-flow nipple that I used with Kaili and thought the fast speed would be enough to let the thickened milk through. That didn’t go too well. Then I found a wide base nipple on a bottle that requires liner inserts. I didn’t want to waste a liner so I cut a slit in the nipple (for the thickened milk) and just filled the nipple. It kept collapsing since the back was open.

I decided to move on to a smaller nipple that my mom had sent me with “teething nodules” or bumps around the base. Averi seemed to like this one but it took quite a while for her to use since it didn’t have a slit opening.

Later I scavenged the bottle isle at the store. I found a really cool bottle with a feeding system that “grows with your baby.” It has three different nipples so I decided to try them all out. One was just like the bumpy one but with a wider base and worked pretty well. One was a soft spout sippy with two slits. I thought it might drown her but she seemed more interested in chewing on it than sucking. The last one was more like a straw and she wanted nothing to do with it.

I presented all my findings to Frances this morning at OT and she giggled at me – like I said, I might have gone a little crazy. She decided to go with the larger bumpy nipple and Averi drank the whole 30 ml bottle in about 30 minutes. She also cut a slit in the smaller bumpy nipple and Averi was able to drink a second bottle. Frances said that the bumps are great for providing extra oral stimulation. I think I will stick with those for this week.