Tuesday, September 28, 2010

PT: Week 22, Goodbye for Now

Last week Averi started PT off grumpy but got happier as we went.  Today was the complete opposite.  She just got grumpier as we went.  She is so over this physical labor thing.

It was actually an interesting session. Abbi is starting her maternity leave tomorrow so she worked us in today which meant that Kaili was at preschool and Averi and I were all alone.  It was kind of boring not having someone running around the whole time.
We did the usual getting in and out of sit and then took it to the next level by trying to get her to lean on one hand and reach across her body to get something.  As I’ve said before, if she could just put her “I’m going to fight this forever” energy into actually trying, she’d be doing it already.

We also worked on kneeling and standing while holding on to something.  Once again, the only motivation we could find was fruit pieces.  Every time she focused and reached for the food her body looked awesome and was pulled together.  Abbi was just holding her up with one finger on her backside.

She really is getting much stronger and I just hope that she doesn’t lose it all during her hospital stays.  I guess we’ll see how it goes.

Support Means Support

Tonight was our monthly DS New Parent Support Group meeting.  Honestly, I didn’t really want to go because I hate having to tell people about Averi and I didn’t want to have another reason why she is behind the other kids in the group.  Luckily I pulled myself together and we went.

At the beginning of each meeting we usually go around the room and tell everyone the last months update on our kids.  As it got close to being our turn I realized that Dan wasn’t sitting next to me but was in fact standing by the cookies eating.  I panicked.  I didn’t want to have to be the one to tell everyone that my daughter was getting ready to start chemo.  I finally got his attention and he came over just in time.

As he started explaining our situation I found myself getting emotional.  This is a group of people that could very easily be in our shoes.  These are people that know what it feels like to have a truly sick child.  These are people who are my friends!

Then, to my astonishment, they brought us bags and baskets filled with gifts – subway gift cards, pampering supplies, books for Kaili, toys for Averi.  I should have known better.  This was exactly where I needed to be tonight.  I felt such an outpouring of love and support and true empathy.

I am so, so grateful for the support that we have received from so many people and I only pray that I will one day be able to pay it forward.

OT: Week 31, Holding On

Averi is still doing well with the honey bear but not really liking the idea of having to hold it all by herself.  This week whenever I tried to hold her hands on the bear she would push it away if I let go.

When we got to OT today Frances decided that we were going to make Averi work for her food.  This only works because Averi is finally showing interest in eating (yippee).  So we filled up the bear and Frances put it on the ground in front of Averi.  If she really wanted it she was going to have to make the first move.

It worked!  By the end of the session Averi was reaching for the bear, picking it up with both hands, and bringing it to her mouth.  I couldn’t believe it!  I informed Frances that since I wasn’t needed any more I was going to go take a quick nap.

Tonight I tried it at home, and would you believe it worked again?
video
I love how she attacks it when she goes in for the grab.  I am so proud of her (and so excited that I have some freedom). :)

Saturday, September 25, 2010

Game Plan

We headed back to the Hematology/Oncology Clinic today to have more blood work done and test Averi’s platelet count again.  As promised on Tuesday, she needed another platelet transfusion (she was down to 23 again).

I took Kaili along with us assuming she could play at the Clubhouse (she loves it there) but they were too full and she had to hang out in the waiting room.  After having Averi’s blood taken and waiting 45 minutes for the results, we headed back for the transfusion.  Little did I know it would take over 2 hours for the platelets to even arrive.
(Luckily there are individual TV's on the transfusion chairs.  The girls were sucked in.  I love Averi's expression.)

All in all, we were there 4.5 hours and both the girls were really good sports about it.  The nurses even managed to get Averi’s IV in on the first try.  Apparently she only has one vein, because they used the same vein in her right foot that was used for the last transfusion and for her biopsy.
(Check out the size of the board they put on her leg.  I guess they didn't want the IV coming out.)

Earlier in the week Dan and I talked it over and called Averi’s doctor to set up a time to start the chemo.  While we were waiting today, she came and talked to me to work out the details.  My mom is coming next weekend for Averi’s Buddy Walk on October 3rd and she offered to stay for the whole week and help us out.  Since Averi will just continue to get worse and need more transfusions, we decided to give it a go.

Here is the game plan.  Averi will be admitted to the hospital in the evening on Sunday, October 3rd to have her blood checked again and be given another transfusion if necessary.  This will also allow them to work her into the OR sometime early Monday morning for her central line placement and the first spinal tap and chemo placement.

She will spend the rest of the day getting tests done to check the function of all her organs (chest x-ray, echo, etc.).  Anything that doesn’t get done Monday will happen Tuesday morning.  The actual 4 day chemo treatment will probably start Tuesday afternoon sometime, and then it’s all up hill from there. :)

Friday, September 24, 2010

Speech: Week 2, Going, going, going

I believe Averi’s speech pathologist has more energy and speaks more than Kaili, and that’s saying quite a lot.  Her sentences run together and she jumps from activity to another without even stopping for air.

I have a hard time following her sometimes so I know it’s got to be confusing for Averi.  She’s really sweet and I think she’s just trying to get as much into our 30 minutes as she can, but it’s intense.

Today we worked played with balls (ba, ba, ba), animals (moo, baa, woof), and puzzles and shapes (communicating where certain pieces go).  Averi seemed to have fun so maybe I’m just letting my pessimism get the best of me.

At the end of the session I had to tell this complete stranger that next week will be our last visit since Averi will be starting her chemo.  For some reason I can pour my heart out to people I don’t even know through the blog but it was hard for me to open up my personal life for her.  I felt like it was none of her business, which is really weird.  Anyways, we only have one more session with her and then I can get a break (if that’s what you want to call it).

Wednesday, September 22, 2010

PT: Week 21, Food Motivation

We took a break from PT last week since it was the day after Averi’s biopsy but I think maybe she was hoping it was a permanent thing.  She started crying the minute we walked in and didn’t even want to just sit and play with the toys.  Luckily, by the end of the session she was calmed down.

First we worked on four-point and trying to get her to raise one hand.  Then we moved on to kneeling, and then to standing.  I don’t know why we didn’t think of it before, but we decided to try putting some dried banana pieces in front of her while she was standing.  It worked really well…we may have finally found her motivation.

Whenever she really focused on the food and reached for it, the rest of her body was very strong and supported.  Of course she got tired and didn’t want to do it (what’s new?) but she did much better.

Averi’s arms are getting much stronger now too (not that she suddenly wants to use them).  The other day she was sitting in her booster pulled up to the table when I turned around and saw her pushing so hard against the table that her chair was rocking backwards.  Luckily her arms are so short she couldn’t get enough push to fall over, but she now eats with the tray instead of at the table.

Tuesday, September 21, 2010

The Facts

We finally got to meet with the oncologist today, get our questions answered, and learn all the details about Myelodysplastic Syndrome.  Here are some ‘fun facts’ for you:
  • MDS is considered a cancer of the blood
  • It has the exact same chemotherapy treatment as leukemia
  • MDS is more common in people with chromosomal disorders, including those with DS
  • People with DS respond better to the treatment than those without
  • The chemo doses for kids with DS are smaller than for those without because the normal dose would be toxic to them (but they still get just as sick)
  • MDS is more common in men and the average age of those diagnosed is 71
  • MDS in children is very RARE (Averi’s favorite word) and is different than the kind found in adults
Luckily, Dan was able to get off work for the morning and came with us to the appointment.  I walked in thinking we were going to have a rough month ahead of us and was blown away when we learned that the treatment is actually a minimum of 6 months, in and out of the hospital.

The chemo consists of 6 different cycles, some of them starting with a spinal tap to make sure that the disease has not moved to her spinal fluid.  She will be given a 4 day treatment of chemo and then kept for observation for 2-3 weeks until her blood counts start to increase.  Then she will be allowed to come home for a week before the process is repeated for a total of 4 times.  The last two months consist of her receiving a different drug which is given for 7 days and then she will hopefully be able to return home to recover for the three weeks in between.  This is part of a nationwide study specifically for the treatment of Down Syndrome children with MDS under the age of 4.

I asked him what our time frame was (i.e. could we wait until after the holidays) and he said we would need to start within weeks.  Her platelets are still really low (down to 32 from 86 after the transfusion last week) and he doesn’t want to give her too many transfusions if he can avoid it, simply because there is a risk every time and she will already need several during the chemo.  In fact, we are going back on Friday for more blood work and most likely another transfusion.

They are going to put in a central line (a catheter surgically placed in a vein in the chest for easy administration of drugs).  I’m excited about this because it means they won’t have to try and get IVs in her all the time.  The only thing is that she is too small for an internal one, so it will have to be an external one that hangs off her chest (one more thing for her to pull on).  This will be placed under general anesthesia, along with her first spinal tap, when she is first admitted to the hospital.

We were also told that Averi’s immune system will be greatly compromised and that our whole family and anyone else who is coming to visit and help will need to get flu shots.

It was a very overwhelming visit so Dan took me out for lunch.  I kid you not when I tell you that my fortune cookie read as follows: “New people will bring you new realizations, especially big issues.”  I’m wondering if the new oncologist thinks that cancer is a big enough issue.  Meanwhile, Averi is happy as can be!

Monday, September 20, 2010

OT: Week 30, Lollipop

Sometimes it seems silly to me that we are still going to OT and PT when Averi has so much going on right now.  But the truth is that when she’s in the hospital for a month she will undoubtedly fall even more behind.  This has put me into therapy overdrive and I am trying to get as much out of it as I can.  Sometimes it feels like there’s not much working for her, so I am trying to help her make up the difference.

She is slowly doing better with the straw.  This last week she did really well and will now take 4 oz in her allotted 15 minutes.  While this is double what she was doing when we first started the new thickener, it’s just barely what she was doing several months ago before we had to take out cereals and stop using the bear for a while (see what I mean about how quickly she falls backwards when we aren’t constantly working on going forwards?).

I am very proud of her and all the work she is doing.  Since talking to the ENT after he did her laryngoscopy, I have put my dreams of her eating like normal on hold and accepted the fact that this isn’t something that will go away anytime soon (or maybe ever).  This definitely keeps me from getting as frustrated as I used to.

Today was a lot of fun.  Frances tested Averi’s abilities with thin liquids by giving her a lollipop.  Sucking on it obviously makes her salivate more and have to swallow.  She loved it!
Several times, Frances tried to get Averi to drink from the honey bear when she was taking a break from the lollipop but she wanted nothing to do with it.  She got very coordinated with getting it to her mouth…and on her arms and legs and clothes.  I’m not gunna lie, this is going to be a great pick-me-up for her in the near future.

Our homework for the week is to get Averi to start holding the bear while she is drinking.  I think she is currently more interested in poking it in the eye than in holding it, but we will work on it.  One day she will be able to feed herself, you just wait.

Friday, September 17, 2010

Speech: Week 1, Orientation

Today was Averi’s first individual speech therapy session.  I’m trying to be optimistic about it, but I’ll admit that I’m a little skeptical.  I don’t really need another appointment to go to every week, Averi’s not talking at all, so I’m not sure how we’re supposed to improve on that, and she only imitates babbling some times.

Truthfully, I’m only giving it a chance because it is completely paid for since Averi has a hearing loss.  It also means that we don’t have to drive 45 minutes to the LEAP group anymore, but it’s only a 30 minute session.  Averi already gets a lot of speech from going to the Regional Infant Hearing Program, which I really, really like, but that is only once a month.

We didn’t really do anything productive today except fill out papers and go over policies.  The Speech Pathologist we are working with runs at about a million miles a minute, so maybe we will get a lot done next week.  I’ve promised myself that we will give it a go before I completely cross it off.

Thursday, September 16, 2010

Don't Count Your Chickens...

Today was supposed to be the day that we got the final say on what is affecting Averi’s blood.  I told myself I’d wait until 4:00 before calling the office and demanding answers to make sure we weren’t forgotten.

So, when I finally succumbed to my exhaustion at 3:00 I figured I’d sleep for an hour and then call when I woke up if the doctor hadn’t called me first.  Two and a half hours later I woke up and immediately started beating myself up.  Not only had the doctor not called but the clinic was now closed and I was going to have to wait until tomorrow to get the results.  Ahhhhhhh!
(This is Averi's new 'kissy' face...I can't get enough of it!)

Then, just after 6:00, my phone rang.  I don’t know if my desperation was just so tangible that the doctor could feel it at the hospital, but she called.  She explained that, like she said yesterday, Averi does not have Acute Myeloid Leukemia (AML).  If she did, she would have to be admitted to the hospital right away and started on chemo which would leave her in the hospital for over a month.  I let out a sigh of relief that that was not my future.

Knowing that she didn’t have AML, I was ready to know what she did have.  As it turns out, she doesn’t have TMD either, she has Myelodysplastic Syndrome (MDS).  We’ve done enough research for me to know that this isn’t really good news.

The doctor explains that it will not resolve on its own and is often called pre-leukemia because, if not treated, it will turn into leukemia.  The treatment is chemotherapy, you know, that same one that puts you in the hospital for over a month.

She says that the only advantage of having MDS as opposed to AML is that we have a little bit of time.  Instead of turning our lives upside-down today, as would happen if she had AML, we can take our time to go over the different chemo options and plan when we want to start the treatments, which will then turn our lives upside-down.

We are going in as a family on Tuesday to meet with the doctor, have more blood work done, and make some decisions.  The whole thing seems so surreal to me, like I’m telling someone else’s story.  The denial hasn’t worn off yet, but I’m sending out a warning that when the anger hits, it’s gunna hit hard.

Wednesday, September 15, 2010

Some Answers

So last night didn’t go too well.  Averi woke up 3 different times crying and gagging on the mucus in her lungs.  I pounded on her back forever and even tried sucking it out but she refuses to cough and just garbles when she breaths.  Luckily the Tylenol is helping with her fever.
The doctor called me around 3:00 today, much earlier than I expected.  She said the results won’t be final until tomorrow, but it looks like she DOESN’T have AML (a form of leukemia) so she won’t need to be admitted tonight, but she does have transient myeloproliferative disorder (the possible precursor to leukemia that I mentioned before).  She will call me tomorrow afternoon to answer questions and give us the treatment plan.

I am relieved that it wasn’t as bad as we had originally thought and I’ll probably be able to sleep a little better tonight, but we still don’t know exactly what’s wrong with her or how they are going to fix it.  From the research Dan and I have done, there are different severities of TMD and we won’t know until tomorrow exactly what we are dealing with.

I know that prayers have been answered and hopefully Averi will have an easier battle to fight.

Tuesday, September 14, 2010

The Biopsy

Today was the big day for Averi.  We arrived at the hospital at 8:30 only to sit in the pre-op room until almost noon.  They finally came to take her to the OR and then the real waiting began.
After quite some time the ENT doctor came out to inform me that the laryngoscope was done.  Her laryngeal cleft repair looks really nice and has healed well.  He asked how she was doing with eating and appeared frustrated that we were still having to thicken her liquids.

He explained that often someone with a laryngeal cleft experiences nerve damage that isn’t reversible, causing them to still have issues with swallowing even after it has been repaired.  I asked if that would ever get better and he said that it might get better with age.

Knowing that we might have to thickener her food forever is slightly frustrating, but I think I’m more frustrated that I’m just now hearing about it.  I have gotten to a point with Averi that I need to know what I’m up against so that I can be mentally prepared to fight back.  At least we know that everything looks good and hopefully her eating will just continue to slowly improve.

The ENT then apologized for the wait, explaining that they had to stick Averi several times before getting the IV put in.  I counted later and found at least 14 spots where they had tried and failed.  It’s a good thing she’s already asleep for that or they would have a problem on their hands.
I then sat down and waited as the 10-15 minutes needed for the biopsy turned into 45.  I got so freaked out that maybe her platelets were so low that she started bleeding out that I couldn’t sit still.  Finally the doctors showed up, explained that everything went well, she didn’t bleed out, and they were taking the specimens to the lab.

Averi was then taken to recovery where her visit turned into a longer stay.  When they finally let me go back to see her I was told that she sounded very croupy and barky and had already been given a breathing treatment.  Both Anesthesia and ENT came back to double check her, debating if they were going to admit her or send her home.

At last the anesthesiologist turned to me, told me I didn’t look like a crazy mom, she trusted me to take care of Averi, and explained that she would be sleeping in my room tonight.  I agreed and we were sent off to be discharged.
Of course the first thing we were told in discharge was that Averi had to drink some apple juice.  I explained that it was kind of hard for her but the nurse insisted and went to get some thickener.  After 15 minutes of forcing it in her mouth, the nurse returned to tell me she didn’t realize Averi had a G-Tube and we could have just given her some liquids with that.

She finally took out the IV and we were packing up when another nurse walked in and said she didn’t like that she could hear Averi breathing from out in the hallway.  The anesthesiologist was called back again but she still okayed us to go home.  I think if I had been more upset about it we could have stayed, but I was ready to go home.

Averi slept the whole way home and then slept some more when I cuddled her at home.  Her breathing sounds pretty bad and is really wet and she has a bit of a fever so I’m a little nervous about tonight.  She is out for the time being and hopefully we will have some answers by tomorrow.

OT: Week 29, Reach For It

I’ve been so caught up in everything else going on right now, that I almost forgot to post about today’s OT session.  I almost didn’t go, just because the next couple of days are going to be really rough (not that Averi knows that), but I decided that going to OT was a better option than sitting at home with my thoughts and waiting for Averi’s transfusion appointment.

Averi is slowly doing better and better with the honey bear.  She has now worked up to taking 3 oz in 15 minutes.

Today we gave her the honey bear and then worked on developing her reaching and pinching skills.  Frances would hold a piece of dried apple off to one side or up above Averi’s head and wait for her to reach and make an effort to get it.

Kaili thought this was really mean and kept trying to help Averi out by pushing the food closer to her.  I had to explain to her several times that we were trying to help Averi learn to reach for things and be motivated, but I don’t think she believed me.

This week we are going to continue working on uping the amount she can take from the bear in 15 minutes, that is, if we aren’t sitting in a hospital room.

Monday, September 13, 2010

Platelet Transfusion

Today was Averi’s platelet transfusion.  I’m glad I packed a lunch because we were there for 5 hours.  Apparently it’s not a quick thing. :)

When we first arrived they stuck her finger to do another blood draw and test her platelets to make sure they were still low and in need of a transfusion.  After waiting 45 minutes for the results (her platelets are at 23,000 and normal is anything between 140,000 and 400,000) we headed back to the transfusion room.

As you may have learned from all of the blood draw horror stories I’ve told, Averi is a really hard stick.  I decided I was done playing “my daughter is a pin cushion” and asked that the IV team just be brought in from the beginning.

Well we waited and waited and they never showed up so I agreed to have their ‘best nurse’ take a look at her.  She numbered both hands and one foot, which I was very grateful for, and finally found a good vein in her right foot.  Needless to say, she got the IV in on the first try!
Then we waited for the platelets to show up and finally started the transfusion 2 ½ hours after we arrived.  The actual transfusion took an hour, during which they took her blood pressure and temperature every 15 minutes.  Averi did awesome!  She didn't cry at all, stole the hearts of all the nurses, and kept trying to pull out her IV.  When it was done, we were told we could go home.

A few minutes later the nurse was chasing me down in the hallway telling me that we needed to retest her platelet count to make sure that it was over 50,000 for the surgery tomorrow.  So we did another finger prick and waited another 45 minutes for the results.  She was up to 84,000 and we were officially free to go.

I’m curious to see how tomorrow goes since no one has told me where the biopsy will be taken from or if she will be admitted for observation over night.  I’m sure that everything will go well and I’m just anxious to get the results so I can start preparing for whatever life has in store for us next.

Saturday, September 11, 2010

The Waiting Game

I love my sleep and often make fun of Dan when he stays up half the night, but I could not sleep last night.  I finally got out of bed and started packing bags, toys, food, books, and my laptop as I prepared for a long day (and most likely night) at the hospital.

It’s weird how my brain has been working, but I got Averi up early so I could give her a bath because I didn’t know when she’d be able to have another tub bath if she was at the hospital.  (She didn’t get a bath last night because my parents paid for our family to go out for dinner and enjoy what might be our last “normal” time together for a while.)
I showed up at the appointment this morning with butterflies in my stomach and cold sweats.  After I answered all the questions, the doctor started talking to me about the different kinds of blood cells, blah, blah, blah…when are we doing the biopsy and when do we get the results?

They finally gave me the option to just continue monitoring her blood every couple of days or doing the biopsy.  I need concrete answers, I want the biopsy.  They then delved deeper into her medical history and told me that they couldn’t do the procedure without approval from cardiology (because she’s had open heart surgery) and from ENT (because of her laryngeal cleft repair and tracheomalacia).

All I understood was that she wasn’t being admitted to the hospital, they weren’t doing the biopsy today, and they obviously didn’t think this was as serious as I did.  My daughter might have leukemia and you want me to go home and sit while you make calls and schedules?

They wanted to test her blood levels again so we went and sat in the waiting room.  We waited for 45 minutes before I finally got up and asked someone why it was taking so long (my nerves were fried so everything felt like it was taking forever).  He said he had her file and didn’t know we were waiting.  Great!

I was really worried about them taking her blood again since her platelets are low (making her bleed and bruise a lot) and she’s such a hard stick.  Luckily it was just a finger prick.  Then we had to wait another hour for the results.  We went for a walk.

When the doctor returned with the results, it was both good and bad.  Her platelets are still really low, the blasts (immature blood cells) have gone down from 10% to 6%, and there are still some other abnormal cells.  They still want to do a biopsy, she doesn’t need to be admitted right now, she will need a platelet transfusion the day before the biopsy is done, and they will call me sometime tonight with the details.

She also explained that, other than leukemia, there are some other possible outcomes.  Transient myeloproliferative disorder (TMD), a condition common in babies with DS, results from rapid growth of abnormal white cells.  It can go away on its own, although it needs to be followed closely since it can also be a precursor to leukemia.  I’m not sure if this is very comforting right now, but I’ll take it.

The doctor did get in contact with cardiology and ENT while we were waiting and ENT said they want to scope her throat to make sure it has healed correctly before the biopsy is done.  I went home with no hope that it would be scheduled any time soon and wondering how I was going to calm myself for the next week or two while our lives hang in the balance.

I received a call at 2:30 with wonderful news.  Averi is scheduled for the platelet transfusion on Monday morning (the soonest it could be done since we have the weekend in the way) and the biopsy will be Tuesday morning.  ENT is going to meet us in the OR to scope her throat and then stay to make sure that there are no complications during the procedure.

The results take at least a day so the soonest we will know what our future holds is Wednesday.  Not my perfect scenario, but the best I could ask for given the circumstances.


I am truly amazed at the love and support that we have received from so many of you.  We are greatly blessed to have such wonderful friends and family.  Thank you for your prayers and please continue to send them our way. :)

Thursday, September 9, 2010

Red Dots

I believe I have previously stated my opinions about the Down Syndrome Clinic here, but just in case I haven’t…it is a waste of time.  I didn’t remember today’s appointment until it was too late to cancel it, so Averi and I went, sat around forever, and told them everything that we tell her pediatrician (very productive).
While there however, I asked them about the red dots that Averi has had all over her body for over a month.  They are not raised and don’t blanch when pressed on.  I thought it was another allergic reaction and have been waiting for them to go away.  Dr. Nash sent us to the lab to have blood work done because she thought it might be a response to low platelet counts.

I went down to the lab and the wait wasn’t too long so we signed in.  I totally forgot that Averi is a really hard stick.  Long story short, it took warming her arm, holding her down with three people, moving the needle around in her arm for quite a while, and letting blood drip down her arm because of a blown vein to get enough blood to run the tests.  I won’t even get started about the size of the bruise.

Then, at 5:00 tonight, I got a call from Averi’s pediatrician telling me that he knew Averi had had some blood work done to test her platelets.  He started telling me something about changing some appointment when I explained to him that I hadn’t talked to anyone about the results.  He took a breath and started to explain.

Averi does have a low platelet count.  It was looked into farther and they found a large amount of blasts (immature blood cells), which have essentially pushed the platelets out of the way.  The blasts are present in more than 10% of her blood and those levels are found in people with leukemia.

My world stopped and I broke down in tears.  The rest of what he said was a blur…more common in people with DS…admit to the ER tonight…bone marrow biopsy…can’t do the tests tonight…appointment in the morning with hematology/oncology…admitted to the hospital tomorrow.

I got off the phone, couldn’t get a hold of Dan, ran over and hugged and kissed Averi, and then announced to the girls that we were going for a walk because I couldn’t just sit in the house for another minute.  Then I took a bunch of pictures of her because I didn’t know when I would see her outside of a hospital setting again.
I am totally in denial until we get the results from the bone marrow biopsy (hopefully tomorrow).  The only thing I know for sure right now is that Averi must have one heck of an awesome spirit because there’s no way that what she has been given in this life is in any way fair.  Is it crazy for me to want her to have a somewhat happy and successful life?

She is a fighter and she will keep on fighting!

Wednesday, September 8, 2010

PT: Week 20, Please Stand Up

At least Averi is getting better at tolerating PT.  She no longer screams until she gags, which quite the accomplishment.

Today we did the usual exercises on the ball and side sitting to get onto four-point.  When Abbi put her in a high kneel (up on her knees instead of resting her bum on her feet) she wasn’t happy but Abbi only had to support her by pushing her bum forward with one thumb.  She especially did well when we could get her interested in a toy and she reached for it.  She just needs a good distraction.

When she got tired of kneeling she would bring her left foot up and actually push up into standing.  This was usually followed by her arching her back since she obviously wasn’t trying to do more work but again, once we got her distracted, she would hold on to the support with only one hand while she played with a toy and Abbi held on to her legs and knees.

After that Abbi decided to try to get Averi to move to get to a toy.  She got her into four-point and then showed her how to move one hand and then one knee to move forward.  Of course she didn’t just start crawling but there were a few times that she picked up one of her hands all by herself.

The funny thing was that she normally hates going from four-point into sitting but she was pushing to do it given the choice between that and trying to crawl.  Apparently we just have to give her a harder choice if we want her to do something.

I am so, so proud of her and how far she is coming!

Wednesday, September 1, 2010

PT: Week 19, Now Raise Your Hand

After doing so well last week, I was curious to see how Averi did today.  I’ve really been trying to do better about having her practice side sitting and such when we are at home and she is less fussy.  I like to think it is helping.

Abbi had Averi do sit-ups on the ball, side sit, get into four-point, and sit up from laying down.  Then she worked some more with having Averi squat to put weight on her feet and stand up.

Every time I think Averi is starting to get the hang of something, Abbi throws in something new.  Today she tried to get Averi to pick up one hand while in four-point.  She was not very excited about it and we basically had to just hold the hand up for her, but she was able to balance on just the one hand and her knees.  I was impressed.

By far the funniest thing that happened today was when Abbi was trying to hold Averi in four-point, and I was trying to distract her and get her to look up, and Averi decided to show us she was done by removing both hands from the mat and collapsing.  The only problem was that she collapsed right onto the toy I was trying to distract her with.  I kid you not, her head bruised within minutes.  I guess that's what happens at PT when you don't do what we ask you to do. :)
Sometimes, after leaving PT, it amazes me the many things our bodies learn to do all on their own.  I can only imagine what it’d be like if we had to put this much effort into every single person born (and how many people would never learn to move around).