Amelia's First Christmas

Make a Smilebox slideshow

Leg bowing early prevention and good posture

Finally I got some good ideas from Amelia's Physical Therapist. Yes, from the one I complained a bit before for nagging about the specialized strolled Amelia did not need. It is hard to explain the positioning so I better present some pictures.

In this "contraption" she feels rather comfortable. The four black foamy pieces are pipe insulations, the two behind her back are normally hidden underneath the chair cover so it does not look so weird. The two pieces working on her legs are usually kicked off or get removed manually by inquisitive Amelia :-) Hovever, I do my best to keep them in place.

Another idea involves positioning Ami during play, on the tummy or on her back. For this purpose I used the type of foam used for swimming (no longer the pipe insulation :-) rolled in a towel. Today I actually figured that turning the "assembly" up side down keeps it better in place. It is really nice, Amelia does not pay any attention to it, it does not create a pressure of any sort, and it serves the purpose very well.

Sleep Study results - great news!

Finally we got the news regarding Amelia's sleep study in November. Everything looks good, much better that the first study back in May. It means that the surgery that Amelia had in July improved her breathing significantly. She had few breathing pauses but lasting just a few seconds and the doctor was not concerned. Her oxygen intake level improved as well. She does not need to see ENT doctor yet, no problem with tonsils and adenoids which makes us very happy. Amelia's pulmonary doctor said that she does not need another sleep study for at least a year which is great!

Ami finally picked up the speed in her gross motor skills development! All her therapists are very impressed. She is spending more time on the belly, playing with toys in this position. She gained a lot of strength in her arms and legs, kicking an pushing herself up (just a bit). Physical therapy is no longer a torture to her, she started having fun with it. She is more focused on the toys and ready to go for her favorite ones! Hands up high, nice stretches across, she really rocks! This past Tuesday Amelia's out patient PT focused on showing me how to position Ameila in the chair and during play to support good posture and straight legs, awesome ideas! I will take pictures and share the ideas with you in my next post.

And last but not least - Amelia is sitting very well in her bumbo seat playing with toys on the tray attached. As you know she loves to play piano so voila! This is world premiere of her playing solo (without daddy's help) :

Piano player

Amelia and Daddy love to play piano together. It seems Ollie always likes to join the fun!

Amelia also mastered self feeding! Well, little rice puffs to start with. She goes crazy about them. She does not care for rice cereal but inhales these instead. Go figure!

Sleep Study number 2

We just came back from the hospital where Amelia had her second sleep study. First one was when she was just four months old, back in May. It showed some apneas, obstructive and central as well so everybody was curious to see how it improved since the decompression surgery in July. It was her first sleep study after the surgery. So far we know that her oxygen intake improved significantly which is a great news! The study was again - great experience. Amelia was very brave and did not complain very much! Just a little. We got very nice and caring sleep lab technician, Rhonda, actually the one we met during last sleep study, so we felt very confident and comfortable.

Amelia fell asleep even before she got the wires on her head! She did not care that it was a hospital room, new strange place.....

After Rhonda attached all the wires and wrapped her head, we were even able to make her smile (with a little help of her favorite toy :-). As you can notice, I again asked for the "adult" bed so Amelia did not have to sleep alone in that scary crated crib! It made the world of difference!

She briefly woke up few times during the night, but fell asleep with no problems. Anyway, it is so good to be back home!!!!! Now it is time to wait for the results and it takes about 4 weeks! Eternity! I will keep you posted.

Halloween album

Make a Smilebox slideshow

Halloween Memoirs

I have tons of Halloween pictures from this year and previous two. Ever since we have kids Halloween is one of our favorite holidays! The magic, the costumes, a lot of orange color! I will most definitely make a smilebox album in the near future but now a little treat- Ollie and Ami in exactly the same outfit and photo setting!

Ami, Halloween 2009, 9 months old and Ollie, Halloween 2007, 3 months old. Who is Who????

photo album

Make a Smilebox slideshow

Amelia visited her best friend

Amelia just returned from her first trip to Baltimore. She did extremely well and was laughing all the time! She was so excited to visit her "twin sister" Ivy. Girls got together second time and played nicely together. Somebody at the museum asked us if they were twins and Ami and Ivy were not even dressed in the same outfits yet!

Ivy's parents were so kind to host our entire family for the extended weekend and we all had a terrific time!

We coordinated the outfits again and had a cute photo session!

But wait! There is three of us now! We got together with another cutie pie - Tessa, just 2 months younger Little Princess! What a bundle of joy...... So hard to tell them apart!

We were also extremely pleased to meet one little gentleman - Nathan! Mom had to hold him as he was running away from the girls! Too much sweetness can be dangerous!

Busy October

Starting Monday Ami had doctors appointments almost every day! But they were all good, routine appointments. Her neurosurgeon was very happy with the healing progress, and orthopedic surgeon confirmed what you all have been saying - Amelia does not need any equipment gimmicks! What a relief...

A good news is that Amelia finally turned into a good eater after almost 2 months since introducing solid foods. She now opens her mouth wide and pretends chewing. The amount of mess accompanying the feeding is also considerably lower :-)

And this is our Pediatrician with Ollie and Ami. She is getting married tomorrow. Best Wishes our Dr. Diana!

New pictures and new video

We just love how she laughs, there isn't more precious music to our ears :-)

Ami loves her kitty...

Equipment overkill

Now I really need your help sorting things out! I have this equipment savvy Physical Therapist who does not talk about anything else but EQUIPMENT!! Yesterday I took Amelia to her expecting some nice exercise and she jumped on taking Amelia's measurements for the special stroller! She even showed me one, boy - scary looking! We surely look for some back support but this stroller supports everything, back, head, legs, has even side support! And I am the type of person that does not like to say NO! So she scared me to the bones, made me anxious and confused. If I say no -to all of this, and the stroller isn't the end of it - perhaps I am a bad mommy jeopardizing my precious baby's development.....Like this did not hit me enough - she started talking about the walking support, bathing support and finally - so called - "self initiated mobility" in terms of highly maneuverable mobility device. Does Amelia really need this ? Quite overwhelming. She already arranged a meeting with the sales person - he will be talking about how we can customize this special strolled to meet Amelia's needs.... My husband said that she must be on commission. It seems we need a second opinion.
Any parents reading this have any equipment experience which helps the child with achondroplasia? There is so much out there that can help but I just do not want to go crazy and would like to hear what can or cannot help when it comes to specialized equipment.
Thank you all for your continuous help with Ami's adventures in Achondroplasia land :-)

New Dada Song

We just got into filming mood so this Dada Song is even better than the one from yesterday. What a cheerful, joyous weekend we had!

Dada song

This is our first video on the blog! I finally caught Ami talking/singing. She just finished eating her prunes and is in silly mood :-)

Miles of milestones :-)

It has been an exciting week watching Ami's progress! She is so eager to do a lot of things. Since last Monday she started saying dadada (Daddy super happy!) and tatata (that's daddy in Polish :-) followed by mamama shortly thereafter. It's funny how Ollie's first human sound was mamama. Mommy's boy and daddy's girl, the way it should be :-). On Friday we noticed another exciting thing - little sharp tooth ! Wow! At least 3 months ahead of Ollie. Teeth are growing faster that hair. A little something right there:

Besides saying few "words" already, Ami loves to sing. A true opera diva, I wish you could hear it! It reminds me the sound of a bird, sort of crow or seagul but of course it sounds like the greatest masterpiece in the ears of loving parents.....

Since we started exercise recommended by the physical therapist Ami feels more comfortable rising the head of the floor. We are so happy to see that!

Ami is sitting with greater balance, not only on her high chair but also chilling out on the sofa! Just for a brief while to look around.

Amelia's physical therapy

Today we had an appointment with the physical therapist as Ami has been referred by her orthopedist to pediatric rehabilitation because he thought that she might need some help increasing her muscle tone and help with overall motor skills development. She is 7 months old now and still cannot raise her head from the belly position, nor can she turn over as her little hands do not have strength yet. So even though I am not the person who likes to push things or rush my precious baby with her development, I have a feeling that she will benefit from this type of therapy.

Christina, the therapist (PT, PCS, ATP - wow, most of this I do not get anyway:-)) was very nice and very helpful. She showed us many interesting exercises we can do with Amelia. Until now we have been so afraid of mishandling her that we rather used only the safest positioning without experimenting too much. That's why I think this experience will be good for Amelia. We are in good hands of a professional who would not do any harm, and still will do a little push so Amelia can spread her wings and fly! Even during the session today we noticed her doing things that we have not tried or were not aware of. I was not aware that she favors her left side lying on her belly, and this is something we will work on,

we only knew that she favors her right side while lying on her back. She really enjoyed the gentle session and exercises, and we came back home empowered knowing how to handle Ami differently, to help her master her motor skills, or rather, to encourage her help herself as she is the one to do the job :-)

Any parents have experience with this type of therapy? I would appreciate any input.

What Mimi Loves

We have not posted any pictures lately so I captured Ami doing couple of her favorite things like bathing, observing world from her high chair, reading, and patronizing her beloved brother!

When is the time to change pediatrician

Do not get me wrong, I loved the doctor. She was warm, loving, smart, caring and holistic. The way I like it. Then something happened. The pink bubble hits the pavement and leaves you with the drop of dirty water. It starts from small things and turns into a domino effect. But the time to move on comes when:

1. Doctor does not return your phonecall (oh, that' s regarding scary MRI results, what I am going to say? This is something for the neurosurgeon to deal with!)

2. You have to wait 1.5 hour to see the doctor

3. The nurse is asking about reaching average child's milestones - like is she sitting? Is she putting some weight on legs when held upright? (I was glad, she actually did not rush to check on that!)

3. Doctor seems scattered, overwhelmed, impersonal, rushed

4. Doctor only notices and talks about challenges (Amelia has low muscle tone and she needs physical therapy)

5. Doctor does not do a proper physical exam, completely forgetting about ears

6. Doctor does not go over the growth chart

7. Finally you are left in the room not even knowing when to come back again. So you decide not to!

The time to make the decision to move on of course comes much earlier than that. But we get attached, we like giving people chances, we are only humans, and we all make mistakes. But some mistakes are just unforgettable. Aren't they?

So we found another doctor. New, fresh spark of energy. She has attributes we were looking for, and she answers to my e-mails. How cool is that?

Happy Birthday Ollie!

Ollie turned 2 today! What a big boy, he is the best son and growing too fast. He is no longer my baby, now I have to say - my boy. Such a happy face, just loves to smile, like his sister! He had so much fun today, as we made a waterfall party for him. All weekend was very special, we had great time together picnicking, laughing, getting together with friends.

Very blissful moments as you can see.....

Amelia meets her twin sister Ivy :-)

In the midst of surgery we are late to report an awesome encounter! During the holiday weekend, July 4th, we had an unusual pleasure to host Amelia's best friend and soul-sister, beautiful Ivy with her parents. We all had great time! We laughed,

and we were actually able to relax and forget about Ami's surgery. Girls were fond of each other, playing and exploring (nice muscle! :-)

For them I think it was almost like looking in the mirror, as they truly look alike! Ivy is only a week younger than Amelia and I can't believe that they will be six months old by the end of July! Time flies, especially when you experience moments of pure joy and gratitude. Thank you Ivy! We are so happy that Amelia has a friend who will understand her like no one else,as she is a LP (Little Princess :-)) too. We do hope that they will grow together and will help each other along the way...

May I have the first dance?

Decompression surgery- great success!

Amelia 2 days after the surgery playing with her toys and smiling like nothing happened....

Last Monday, July 6, Amelia had decompression surgery - professional name - suboccipital craniectomy for cervicomedullary decompression. She did extremelly well, so did her neurosurgeon! The preparations for the surgery took longer than the surgery itself totaling a little over 3 hours all together. Luckily there were no compications. I was able to see Amelia immediately after she got transferred from the operation room to the Pediatric ICU. She looked good. Sleepy but quite comfortable. This picture, with her medical team, was taken right then.

Doctor said that she really needed this surgery as her foramen magnum opening was very tight and he had to remove bone in few places. But it was all worthwhile. Her breathing improved tremendously, her oxygen saturation also jumped up. The monitor on the picture above is showing 100% oxygen saturation! What a relief. The surgery was over before 5 pm and she started nursing at 8 pm! Just like during her sleep study - I requested that she stays in a big bed instead of the crib (cage) so I can lie down next to her and nurse without the need to move her too much :-) Next morning, after her anesthesia wore off, she started to feel painful. I was told that they avoided narcotics on purpose, as they can alter neurological exam. Well, I told them that she needs something as she refused to nurse. Nobody certainly wanted that to happen or else keep her uncomfortable so she got a tylenol+codeine cocktail and started feeling well again. She slept most of the time in the hospital. Everybody was so accommodating and helpful! Last Thursday, only 3 days after the surgery, we were back home. Ami has been doing great ever since. She is happy, bright, giggly. She is only on Motrin and does not need the tylenol/codeine since coming home from the hospital. We are all so happy that this is over. It was so much harder on us than on her! Now the only wish is to finish her pain medication. She hates is so much! Does not want to swallow it and does everything to avoid it! The better she feels, the greater the resistance! Luckily it is not going to last much longer. Just a few more days :-) Thank you all for your prayers, positive thoughts.

Some super-Dad pictures!

Special Father's Day card

Special Father's Day card

Amelia will have surgery

Oh boy! And it is happening. We were afraid of it and tried to prepare for it but the news still came as a bit of a shock.... Yesterday's MRI clearly confirmed that there is a foramen magnum stenosis and mild indentation of the cervical medullary junction so Amelia is scheduled to have decompression surgery July 6th.

The MRI lasted only 5 minutes but for me and Ami it was the worst, longest, creepiest 5 minutes in our life together.... I was inside the tube with her, it did not help her a lot as I was trying to restrain her and she hated it! Luckily there was no anesthesia involved. I did not know that MRI was so noisy! They gave us ear plugs but it only helped a little.

Then we saw pediatric neurosurgeon and he said that he would not like to wait too long with the surgery. Amelia would not "outgrow" it and it can only get worse pressing the spinal cord. The bad thing is that the spinal fluids cannot flow freely so her head had grown more than it supposed to. The not-so-great results of the sleep study are most likely caused by this compression.

So we hope and pray for the best results, successful surgery, and speedy recovery but at the same time we are afraid of complications, nerve damage etc. The doc said it is "a serious surgery". Please send Amelia your best.....

Sleep study results

I am not sure what to think about the results, seriously. Amelia has Obstructive Sleep Apnea Syndrome as the found evidence of some mild to moderate obstructive apneas (AHI > 4/hr - I am not sure what that means.) They say that the episodes were "short" in duration, but 12 seconds does not sound short to me! There were also some central apneas, or as they say in the report "central pauses" in average 3,4 per hour with an average duration of 7 seconds. Average oxygen saturation was 96%. Oh boy...

The doctor who called me with the results said that there is nothing alarming and I am under impression that there is also nothing life threatening. Apparently her oxygen intake is good enough. They did not recommend any treatment just to repeat study in 6 months.

I just cannot imagine her not breathing for 12 long seconds! How is that - nothing to worry about? This coming Monday we will see what neurosurgeon will have to say and how these results are affected by the spinal cord pressure. I am starting to fear that decompression surgery will be inevitable.... 

Heads Up!

Something on the happier note!
In all that testing turmoil I failed to announce that Amelia stared raising her head a bit. Initially she was doing that only while lying on my chest but lately she started accepting and even enjoying playing on the mat while lying on her belly. She hated that position and was getting mad every time I put her on the belly but we kept trying and there you go! I took a picture to memorize this happy event. Daddy and Ollie are her greatest fans! 

MRI results - not so great

I was hoping that after that busy week with all the tests she will get a break from tests, doctors, etc. But that was just a dream...  MRI showed some mild compression on the spinal cord and Ami will be evaluated by neurosurgeon 6/15 after another MRI.  He will decide if Ami needs surgery. This is dreadful and scary thought to me. I know it happens a lot, I talk to parents who lived through child's decompression surgery and those who are going experience this. I am so sad and confused....After a period of peaceful acceptance I find myself again asking WHY, and why  things like that happen to innocent little angels.....

I thought that she did not have that problem because she shows no symptoms of that compression, her motor skills are good, so is her development. We are also waiting anxiously for the sleep study results, I am sure that will also play a big role in deciding if she is going to need the surgery. 

I pray she will not.

MRI and CT scan done today!

Ami was so great today! I was more scared than she was... Just because it was her first anesthesia.  Both tests took only about 3 hours but Amelia did not have to get sedation for the CT scan, she was still a little loopy after the MRI so she did not care too much about the CT scan, especially because I was with her the whole time. She did not cry a single time and she was sooo hungry! Luckily it was not long after she woke up from the anesthesia until I could nurse her and I tell you, she ate like a horse! Most definitely made up for the hungry hours :-)

Doctors said that she did great under anesthesia. No problems at all, it made us so happy. We hope that her results will be just as pleasing! I took a picture of wonderful people taking care of Ami today - two anesthesiologists and a CT scan tech. Super nice and caring. Thumbs up for Yale New Haven Hospital and Yale School of Medicine again! 

Sleep study done!

Morning after the study. Family reunited!


Monday night Amelia had her first sleep study. It was not all bad and stressful as expected. Sleep lab at Yale Children's Hospital was actually nice and cozy. Amelia was even allowed to sleep in a big bed with me and they took that scary, cage-looking metal crib away. There was no way she was going to sleep in that monster bed. I just had to sign a release and they rolled the regular hospital bed in  the room. After we arrived at 7 pm Ami fell asleep instantly on the additional bed in the room. As happy as a clam, not suspecting what was coming. We took a pillow and her blanket from home to comfort her. 

 

Then I had to wake her up so the lab tech, Ronda, could check her weight and length and start putting "the weird stuff" on her head. The good thing was that Ronda let me hold Ami on my lap during the "wireing" so she was calm for the most part, even slept a bit. After an hour of hard work Amelia looked like an Alien.

She had no problem falling asleep again. We cuddled together and she slept all night. She had a very good sleep study and we hope that the results will be good as well. It will take three long weeks to find out the details.  Ronda said that her average oxygen level was 97. Is that good or bad?

Next week- big week for Amelia

Finally we will have all the necessary tests done and all in one week. Next week is going to be busy and troublesome for Amelia. Starting on Monday she will have her first sleep study. We were extremely lucky that the sleep lab got the cancellation and they called us. Otherwise it was going to be at least two months waiting. There are only two pediatric sleep labs in Connecticut and they are extremely busy but fortunately cancellations happen all the time.

After Monday night comes Friday testing. Ami will have MRI and CT scan on the same shoot. This way she will not have to go through anesthesia twice and fast twice. I am worried about anesthesia but it also troubles me how she is going to fast for 6 hours (and how am I going to survive that!) However, after talking to my friend tonight I am uplifted and I try not to worry in advance. I decided to live in the present moment and worry when there is a good reason for that, not just because I fear about the future.

"Do not worry about tomorrow, for tomorrow will bring the worries of its own. Sufficient to the day is its own trouble." (Jesus)

Please keep Ami in your thoughts and prayers. Ami says -Thank you.

In search of safe baby carrier!

I have been looking for a baby carrier which will be safe for Amelia and would not make her kyphosis worse. Her doctors say that it's best not to use ANY carrier at this point but I am getting tired of carrying her around in my arms. She is 3 months now and quite heavy! Does anyone use or used carriers or slings safely for babies with spinal problems like kyphosis? I found a picture of a baby wrap that I really like and it wraps the baby in many different positions. So dear parents please let me know what to do when you want to keep your baby close to you safely and comfortably while your hands and back are saying no!

Thank you!