Friday, October 15, 2010

October 14th, 2010
I haven’t had much time to write about Amelia’s progress lately, since we were dealing with some of her grandpa’s health issues. But he seems to be on the mend now, so I’ll try to get you caught up.
We don’t have nearly as many doctor’s appointments now which is nice, but we still take her to occupational therapy, physical therapy and she has been to the ENT clinic, the endocrinologist and the family physician. The endocrinologist did another blood work-up which showed that her growth hormone is still low, but she has been staying very consistently on her growth curve in the 25th percentile, which is pretty good. At her one year check-up she weighed almost 20 lbs and was 29 inches tall. The visit to ENT showed both ear tubes clear for the first time. A couple of weeks ago we were very worried about a lot of discharge from her eyes and a quick visit to the eye surgeon revealed that she has a blocked tear duct. Some surgery may be needed to deal with that in the future. Her eyes are extremely light sensitive and she does not like to be outside when the sun is shining. She hates hats and sunglasses don’t fit on her nose, so we are quite limited with outside activities.
Kristina’s efforts to have Amelia evaluated at the House Ear Clinic in LA have been absolutely frustrating! You would not believe the number of phone calls, faxes and the amount of paperwork that has gone into trying to get the insurance company to agree to this. After two rounds of appeals (each requiring about 30 days) they finally approved the visit, but when Kristina tried to make the appointment at House Ear, she was told they did not accept her insurance company! At this point the insurance company itself is appealing. We just keep praying for the Lord’s timing in this.
Amelia is of course quite unaware of all of this hassle and is having fun learning new things every day. She is still not walking on her own, but getting a bit more adventurous. She has been cruising along the furniture for such a long time that she only knows how to walk sideways, but lately she is trying a few forward steps. She loves all her toys, especially wooden puzzles and board books and things that fit inside each other or have levers to pull and buttons to push. She’s very curious and explores everything she can reach. She pokes her head behind the doors, under tables and chairs and inside cabinets. She’s willing to eat just about anything we put on her high chair tray and she recently started holding her own bottle. This may not seem like such a big deal for most babies, but since Amelia has very little suction and has to chew on the nipple while squeezing the bottle at just the right rate we think it’s a great accomplishment.
Her sign language vocabulary is growing also and she is trying to communicate with us in her own little way. She is now only wearing her right hearing aid and is tolerating is much better. As far as we can tell there is no hearing, but until we know for sure we’ll keep using it. Please continue to pray that we will be able to meet all the challenges ahead for Amelia.

Tuesday, August 24, 2010

laughing video

I have been trying to post a video for about a week now and just can't get it to work. I am trying a shorter one just to see if it will go through............

Monday, August 23, 2010


August 2010
At almost 14 months Amelia is trying hard to communicate with us by watching our hands and trying to imitate our signs. I made a list of the ones I have actually seen her do and there are about 20 of them by now. Of course there is “eat, more, milk, mom, dad, up and hat”, but she’s signing so many more now, such as “flower, bird, cat, dog, fan, cold and butterfly”. Usually the signs are just random, which means she is “babbling” with her hands, but she is beginning to do more than just imitate and has signed “eat” or “milk” when she’s hungry. The easiest way to teach her more signs is when she is sitting in her highchair and we have both hands free to show her a picture or a toy and make the sign for her. She is very attentive and will sit for quite a while for these “lessons”. We have covered just about all the farm and zoo animals now and many toys and clothes, probably about 30 more signs. She loves it when I play “where is …?” with her and hide an object for her to look for. It’s such fun to see her brain develop in this way and I hope that we can keep a step ahead of her in learning sign language.
Amelia also seems to realize that we have to squeeze her bottles for her when she drinks, so she let’s know when we’ve stopped squeezing by growling at us. Or sometimes she’ll touch our hand to get our attention. It works!

Tuesday, August 3, 2010

new things

Sorry for the long overdue update!

Amelia had her post surgery follow-up about 3 weeks ago and her doctor was very happy with the way her palate has healed. She still has a small opening at her gum line which we didn't realize will be there until she gets a bone graft at 6 or 7 years old. She will need that to help her adult teeth come in properly. We were disappointed to find out that she will have a hole in her palate for that long but I'm sure she will figure out how to deal with it and it won't slow her down at all. She is trying all kinds of new foods and very little comes out of her nose now.

Omi took Amelia to her physical therapy appt last week and that went very well. The therapist hadn't seen Amelia since before her surgery and was suprised at how far she has come. In those couple months Amelia has learned how to crawl, pulls herself up to standing, "cruises" along furniture and sits unassisted for long periods of time. The next step is walking......yikes! It may take her a little longer to fiqure that out since she is most likely missing the balance nerves in her ears but she is a very determined little girl and will get it eventually. The therapist said that her development at about the level of a 10 month old and for everything that she has been through so far that is pretty amazing.

Amelia is figuring out how to communicate with sign language and has really taken off with it. We counted ~ 30 signs that she seems to understand and tries to imitate. She is very engaged when we play with her and will now bring us toys that she wants to play with. She especially enjoys chunky puzzles, playing with magnets on the fridge and books. She is very curious and is into everything!

Tuesday, July 13, 2010

Reflections on Amelia's first year (by Omi)

I know a lot of you probably receive my mom's email updates and have already read this but I felt like this was a really nice reflection on Amelia's first year and wanted to share it with everyone.

July 1st, 2010

Amelia is now one year old and we celebrated her birthday (along with her godmother and aunt Shelly's) with a family get-together of about 20 people. Some of our cousins from Massachussetts were in town also and were able to join us for this important event. Amelia was passed around like a football and tolerated all the attention reasonably well. The party took place mostly outside in the Heston's lovely backyard and since Amelia does not like the bright light, she complained everytime she was not shaded well. But she is learning to cope by squinting her left eye lid which gives her kind of a rackish appearance. After the barbeque we all enjoyed a huge chocolate cream cake. Amelia liked the birthday candle and was given a tiny bit of cake on her high chair tray. After pushing it around for awhile and playing with the crumbs, she decided to rub it on her head! Some of it actually ended up in her mouth, but she was not terribly impressed. She enjoyed "helping" Siena and cousin Izzy open her gifts of new toys and cute clothes.

After everyone had gone home and the chaos of the party was cleaned up, DJ, Kristina, Tom and I had a chance to reflect on this most difficult and challenging year in our lives and on how far Amelia has come in such a short time. When she was born we were all terrified of what the future would hold, but now a year later this amazing little girl has taught us so many lessons we otherwise would never have learned. We have been introduced to countless medical personnel who have attended to Amelia in such a caring way and we have been supported by literally hundreds of wonderful people who pray for her on a regular basis and comfort all of us when the going gets tough. Kristina who has always been shy, has learned to be an advocate for her daughter. DJ and Tom have learned to put up with emotional women and to quietly lend their support. I have learned that there are things I have absolutely no control over and to trust that God know best. (This is a work in progress!) Siena is learning the joys and challenges of being a big sister. Amelia has spent countless hours in her car seat going back and forth from all her doctor's appointments; she has been poked, prodded and examined by every imaginable specialist and endured anesthesia and surgery time after time. Even when she is in obvious pain she manages to persevere and will allow us to distract her with a few new toys.

She is in most respects just a typical one-year-old. She crawls all over the place and can destroy a room in a matter of minutes by scattering toys from one end to the other and pulling down everything she can reach. She pulls herself up on anything in reach and cruises along the couch and tables. She loves to open drawers and push buttons and levers. The fact that she can't hear does not deter her, but she prefers to have her "people" in her sight. Head rubs are still her very favorite thing and she often comes over to us to get her "fix". If we don't pay attention she'll lift one of our hands to put it on her head. If we still don't oblige she reaches up and moves it back and forth. When all else fails she rubs her own head! Amelia does not vocalize much, but she does make some babbling noises and occasionally lets out a squeal when she sees her mamma or a favorite toy. She is watching our hands more and has started to "babble" with her hands. Her sign language is emerging, but still very sporatic and all over the place. While sitting in her high chair she often signs "eat" on her forehead and "mom" on her ear or cheek, but she's trying. We can play simple games like hiding an object (like a ball) and she'll try and find it. Of course her attention span is not very long. She's eating quite well from a spoon and not as much food comes out of her nose, so that must mean that her cleft is healing. She will be seeing the plastic surgeon again later this month. As far as we know he wants to wait for further surgeries until she is three years old to allow for more growth of the ethmoid bone. At that time he plans on operating on her nose, eye placement and forehead. Ugh!

There are not quite as many doctor's visits now as during most of this past year, but we are still continuing visits to ENT to make sure the tubes are clear and to occupational therapy to help us learn how to strengthen her core muscles for sitting independently and better balance. (She still prefers to play laying on her tummy or back.) From time to time there will also be visits to the endocrinologist, cardiologist, ophthalmologist, eye surgeon, neurologist and geneticist for follow-up care. I expect that a special dentist will be added to this list and of course, her one-year check-up with the family physician is coming up very soon. And needless to say we are not giving up on her hearing! We still don't have any more information on the visit to the Ear Institute in LA, but Kristina is still working on it. The HOPE representative from California Early Start program told us during one of her home visits never to put any limits on these special children, because she has seen time and time again that they will absolutely amaze you with their accomplishments.

We are convinced that Amelia's progress is due to the many special prayers being said for her. If she can come this far in one year, who knows what can happen in the future?


What a cute smile!

Monday, July 5, 2010

Amelia's birthday party

Last Sunday we celebrated Amelia's 1st birthday. I can't believe she is already a year old! Amelia had a great time getting lots of love from her family. My cousin Tina and her family flew in from MA just in time to help us celebrate. Amelia even tried a little birthday cake (although she much preferred to rub it on her head than to eat it).

Saturday, June 26, 2010

Happy 1st birthday my little sweetheart!!

Monday, June 14, 2010

first signs

Yea.......Amelia's learning sign language! She has been signing "milk" for a little while now but usually while she is drinking a bottle and not necessarily to ask for it when she is hungry (she usually just cries instead). The past couple of days she seems to have been practicing signing "momma" and "dadda" :). And just now when we fed her dinner she signed "more" and "eat" for the first time. We tried to get a video of her new signs but of course our camera card ran out of space while we were recording (and my hands are in the way too, duh). You can see her sign "more" in the beginning of the video and "eat" at the very end. This is especially exciting since we just found out at her latest hearing test today that she doesn't seem to be able to hear anything in her left ear and little to nothing in her right ear. We are working on getting her an appointment to see a hearing specialist in LA to see if anything can be done to help her. In the mean time, we are so happy that she is starting to communicate with us through sign language.

rice cereal

Amelia's palate is continuing to heal very nicely. We started giving her solid foods (pureed of course) about a week ago and she seems to like it. So far she has had rice cereal, peas, carrots, sweet potatoes and a little bit of banana. Sweet potatoes are definitely her favorite. I seem to remember that they were one of Siena's favorites too. It's been a lot of fun feeding her. We have been waiting patiently for the last 6 months to give her something besides her bottle. She may have gotten a few bites of ice cream and frosting along the way but luckily it hasn't seemed to have ruined her taste buds :). Siena is very excited because we have been letting her fed Amelia a little bit too. She is such a good big sister!

Wednesday, June 2, 2010


Today Amelia had her post-op appointment. Aside from having to wait in an overcrowded and slightly uncomfortable waiting room for over an hour for a 10 minute visit with the doctor, it went very well. Dr. Cohen is a great surgeon so it is definitely worth the wait. Her palate is healing very well and she is completely off pain meds :). She has a small opening on the side of her palate that he had to make to be able to close up the rest of it but that should close with scar tissue in about 5 more weeks. He said that we won't be able to tell the difference between the scar tissue and a normal palate once it is completely healed.

Wednesday, May 26, 2010

we're home :)

Amelia was discharged from the hospital this afternoon! She was doing very well so the doctors felt comfortable letting her go home. We just have to make sure she drinks enough milk so she doesn't get dehydrated. She hasn't taken too much yet this evening but she was on fluids all day so she should be ok.

I sat in the backseat next to Amelia on the ride home so I could rub her head (head rubs are one of her most favorite things ever! She will even grab your hand and put it on her head if she feels the need for one) thinking that would keep her calm for the ride home. Unfortunately that plan backfired..........she cried the whole way home because she wanted me to pick her up and hold her. It was a long, heartbreaking ride home.

She is asleep now. We have to wake her up every 4 - 5 hours to give her pain meds so they won't wear off. It will be hard to wake her up but it will help keep her comfortable so it is worth it.

a quick update

The surgery went well. Repairing her palate was a little more complicated than initially thought so the surgeon just focused on that and did not do any touch-ups on her lip. He said that it all went very smoothly though. We won't find out the results of the hearing test for a little while. It is a test that is not done very often here in the US so it will take a little while to interpret the results. One of the tubes in her ear had to be replaced again (the right one this time) and she had a pretty bad ear infection behind the tube so I'm sure she will feel better now.

Last night was a little rough. Amelia slept most of the night and when she did wake up she was pretty miserable. I ended up holding her the entire night because when I would lay her down she would wake up (ok, so I only tried to lay her down once) and also because I like to snuggle with her :). We finally were able to get her to take a little bit of milk this morning. We aren't sure if we will need to stay tonight too. It depends on how well she eats today and if they can take her off of the sub-Q fluids. She seems a little happier this morning so hopefully she will continue to improve quickly.

Tuesday, May 25, 2010

crawling video

What a big girl!

here we go...

Today's the big day. Amelia's palate repair surgery is at 3:10 today. She will also be getting a little touch up on her lip and another test to check to see if her auditory nerves connect to her cochleae. I had been planning on starting this blog awhile ago and was trying to decide if I should backtrack and include all of her history but it was taking me way too long. My mom has done such an excellent job updating everyone with her journal that I just decided to start now. We are busy getting ready to go to the hospital. She will be staying for 1-2 nights depending on how she eats after the surgery. The recovery is supposed to be painful but she is such a tough little baby that we are hopeful that it won't be too bad. We will try to update everyone as soon as possible.