Simple Surgery to the Experts - Not so Simple to the Mommy

Allie seems to be saying 'NOOOOOOO! I don't want to do it!" I can't blame her and if my picture was snapped right now... I think we'd look a whole lot alike (I'm just not as cute with it!).

Well, we are here again... the day before Allie will have 'minor' surgery. I dread it and I've known that as the day gets closer, I would get more nervous and that causes me to try to organize my thoughts as well as all that will need to be done that day and during recovery. I also try to remind myself that we went through Open Heart Surgery - this will be nothing. But, surgery is still just not something anyone wants to do. I'm very thankful it isn't serious and it isn't heart surgery. But, Allie is over 2 now and we all know what that means- she is independent and a bit stubborn when it comes to doing something she doesn't want to do (like take medicine, for example). Plus, she can now let us know when she doesn't feel good or something hurts with really pitiful expressions and cries. All you parents out there know how this feels - they hurt and we can't do anything to fix it as quick as they would like. Plus, at 2 - none of it makes any sense and all of it is scary.

Here are the details of how this surgery came to be. We started out with the plan to have her get her 4th set of Ear Tubes - which even we admit is minor and not a big deal. But, then we decided to have her Tear Ducts cleaned out (for lack of the official term) to eliminate the tear that often appears when Allie is perfectly happy and causes most everyone to tell us that poor Allie is upset - when, she really isn't. Not to mention, it is probably annoying to her and as of late, her eyes are often a big "goopy"and this could cause vision problems, too. With all of this said, this is a procedure I'm nervous about and said a lot of prayers about it. After talking to the doctor and finding out that he has not seen a change in her tear ducts over the past year and that given that scenario, he does not expect it to clear up on its own and they have found that the earlier this surgery is done, the higher the chance for success. So, we are doing it. (Note: They will not touch Allie's eye, just the tear duct which will be cleaned out with a balloon type instrument.)

Then, we discussed having Allie's adenoids out - if she has them (Note: Not all kids with DS have adenoids - many don't and those that do have them they are often enlarged). Since she is going to be under we figured why not do all of this at once. No one wants to plan to put her under again after all. Anyway, the adenoids, which we learned are next to the tonsils (in young children) and can often swell and cause problems for all children, but kids with smaller and unique facial structures - like those with Down syndrome - they can cause additional problems. Allie has had a rough couple months with very bad congestion issues. On average - once a night - she will be so congested and cough so much that she will get sick. Yes, you are right - poor baby!! So, removing the adenoids will give her more room in the back of the nose/throat area and hopefully reduce the congestion, plus allow her to sleep more soundly.

Then, while we talked about it with the ENT, we asked when and why would tonsils be removed. Which is normally not done at 2 years old unless there is evidence of Sleep Apnea - or more accurately - Obstructed Sleep Apnea (OSA) (which is also a very common thing with Down syndrome individuals- see all these "freebie" things we get with DS?). This is where things like Adenoids and Tonsils are in the way and cause a child to have OSA. In discussing OSA, we described Allie's sleep patterns and we all suspected she may have it - we have since watched her sleep more closely and confirmed our suspensions. So, the tonsils have to go, too. We are hoping this clears up her issues, but we are warned that sometimes doing all of these things don't fix the problems. Again, part of DS and nothing we can do but hope and pray that this fixes everything for her.

Because of the removal of the tonsils, the surgery is a bit more intensive. Recovery - for Allie - as the doctor put it - will be a bit harder. She will have to stay overnight for observation and has to stay out of school for a week. And, this may not solve the problem. But, as our wonderful and much trusted Pediatrician has told us - this would give Allie a chance to sleep better and be less congested by removing the adenoids, tonsils, and clearing out her ears and tear ducts. And, in his experience by around 4 or 5 years old, she will probably have had to have her tonsils out anyway. He did let us know that often, DS kids that have this done often report weight gain, which we would welcome for sure. Additionally, there is a chance that 3 years or so from now, we could still be putting Allie through sleep tests for true Sleep Apnea and/or allergy testing - if this doesn't clear up her issues. So, prayers that this will be successful are much requested.

On a separate note, Tim has had shoulder surgery last week to repair a 90% tear in his rotator cuff. We did not expect this tear to be as serious as it was and the surgery was much more painful than anticipated. But, now - 2 days later, he is doing better, but has his arm in a brace and will only be able to help with Allie in a limited capacity. So, I'm practicing my nursing skills - which are really quite poor - and anticipating a very busy and exhausting week taking care of poor little Allie and helping Tim if and when he needs it. Of course - we all know Amazing Allie does surprise us all the time. She may not have any issues and all this worry might have been for nothing.

Allie was a very good nurse as she is seen her putting the blanket back onto her Daddy.

I'll try to keep you posted as I can during the next week. Thank you in advance, for your prayers.

P.S. Please add little Cara Conn to your prayer list. We have met her and her family through our local support group, but then met again via a cute little boy, his mother and a conversation at a local store reconnected us. The little boy saw a similarity in Allie with is friend, Cara, who we quickly learned also had Down syndrome. We have since been in touch electronically and we all look forward to the day when both little girls are feeling better and can have a play date. Cara will be having heart surgery on February 18th. http://www.caringbridge.org/visit/caraconn

A Visit with Santa

Early December we ventured out to meet the big man in the Red Suit. I wasn't sure how Allie was going to respond. She had been in a particularly strong "Mommy" mood and wasn't so keen on going to other people - friends, relatives, teachers, strangers... it wasn't a really optimum time to go meet Santa again. But, December was upon us and we had an invitation for a "private" (okay - with about 300 of our fellow Early Intervention friends (EI)) breakfast and a meet and greet with the Big Guy himself. So, we dressed up in our finest, told work and school, they would have to wait, and headed to the mall to meet the man again. The last two years, Allie really had no issues with Santa. The first year, if I so boldly recall, her MOM had the issue. You see, after keeping my baby secluded in the NICU and literally only doctors, nurses, Great Grandmother, Tim and I getting to hold Allie, it occured to me suddenly, I was about to let (excuse me, Santa) a stranger hold my daughter. See... I freaked a bit. After all, I've known Santa for a long time, but for a little while that morning when it came to me handing over my 3 pound baby, he was a stranger (and a bad one at that!). Clearly, I came to my senses, had them call Santa back over to where Allie and I were hanging out wishing we could have another shot at the Santa moment, and got him to come back and hold Allie. Anyway... then, the next year we went to the mall, again with our EI folks, and Allie went right to the big guy. I half expected her to tell him what she wanted and to speak her first words. That didn't happen. But, this year, I was sure she would squirm and fuss and we'd have one of those pictures of Santa, Allie and her Mommy - holding Allie. I wasn't looking forward to that, but it became my only backup plan.

We got there early and took a moment to go sit on Santa's velvety green chair before he was using it. I thought maybe that would help Allie be comfortable. She clearly was comfy in his chair and gave me some wonderful pictures. Then, we ate breakfast, talked to Santa a bit, ran into some good friends like Karyn, Amy, Jenny and Victoria and met many new friends including some of our future therapists from our county! Then, we realized that Santa was no where to be found. He must be in his chair! So, we quickly headed over to the "North Pole" to find we weren't first in line this year. In fact, we had quite a wait, but enjoyed it with our friends Lisa and her son, Noah. This is where Noah and Allie wooed the crowd with their cuteness and we met several new friends there as well.

The big moment came... Allie's turn. I put Allie in Santa's lap and prayed the man (boy?) taking the pictures would take some really good ones. Turns out, he didn't seem to be capturing any from what I could tell. Allie looked at Santa, Santa looked at Allie. Allie was a perfect Angel. The man told me to look at the pictures and pick one and I didn't have the heart to tell him that none of them captured my "moment". So, I said thank you... picked a picture and promptly put Allie back on Santa's lap and grabbed my favorite picture of all (complete with my finger over the lens, but I was able to crop it out!).

I was so proud of Allie. As you can see, that day she took a pause in the "only Mommy mood" and went to several friends and Santa. She is such a big girl. I think she knew it was an important photographic day for Mommy. Santa was wonderful to us, too.

And... wouldn't you know... a few weeks later another one of Santa's family members (his brothers help out with the store visits, you know) was waiting for us at our local Walmart! Allie again went right to him. This time it was while sporting her Chicago Bears outfit that Aunt Mo-Mo gave her and Aunt Mo-Mo was at the game that day. AND The Bears won (this is a big deal, you know). So, my little trooper seemed to move quickly out of the "Mommy Only" phase and picked a wonderful time for it. Unfortunately, the rest of the month found Allie under the weather and we had to miss several much anticipated Christmas gatherings. But, we gave Allie lots of hugs and took care of her and reminded ourselves that there is always next year.

We hope your Christmas was very Merry and

Bright and that Santa was very good to you, too!

Love,
The Lovell Family

Good Times with Great Friends

As you all know, my posting has been lacking lately. Life is getting busier - as many told me it would as Allie progressed in age. I'm still refusing to accept that she is already over 2 years old! But, the days I forget - she reminds me by signing "No"; grabbing at my face when she wants my attention - which is always when I'm around people I'd rather not have them see her do it; and the refusal to eat food she loved the day before. I'm told this is all perfectly normal 2 year old behavior, and you know I love it. (well - not really "love" it when her nails are a tad too long and she grabs my face, but you know what I mean.)

With all that said, I wanted to step back and talk about December a bit. We had a wonderful, but busy month. Allie was sick a bit with a lot of congestion, but she tolerated it much better than most adults would. While she wasn't as social when we were out and about as she normally was, she was still fun and a joy to be with. Early in the month we celebrated Christmas with our very good friends the Mize family. I've spoken of them many times before and they really fall into the "family" category more than the friend category. Tim and Randy's friendship goes back to when Tim was about 12 years old and that seems to put them more into the category as "brothers" than "friends". Without giving away ages, you can figure that was quite a while ago. They have seen each other through many stages of life and been there for each other in many ways more than official family members. It is such a wonderful thing to have a friend that knows you and accepts you as you are for so many years. Tim was there at Randy and Sharon's wedding and even took pictures for them - which is fun to look at so many years later. When Tim and I got together many moons ago (it has been 15 years ago this week), he often spoke of them and meeting them was very important. Since that meeting, I've been able to grow in the relationship and consider them family as well. In fact, all of them played a big role in our wedding. Randy and Sharon's oldest daughter, Carrie is only a few months younger than Tim's oldest daughter, Candace (who celebrates her 26th birthday today - Happy Birthday, Candace). Their youngest, Kristin, is several years younger than Tim's son, Cruz. Therefore, raising children has been something we've done together for years. Now, they are here for us as we enjoy Allie. Carrie and her husband, Nick, couldn't come for Christmas, but Kristin, Sharon and Randy came bearing gifts and fun. We had a wonderful day hanging out together and they spoiled us in the traditional Mize fashion. Allie enjoyed sharing her videos and toys with them and we all just pretended it was Christmas morning and had a lot of fun. We actually celebrated a couple weeks before Christmas given we wouldn't be able to see them on Christmas day. It is such a comfort to have friends that go back so many years and are always with you through thick and thin.

Thanks to all of the Mize family for giving us so many wonderful memories of fun times together!

Let's Go To The Zoo

Okay... we aren't really going to the Zoo today, but Allie is so ready to go! We have been watching our new "Zoo Train" Signing Time DVD and she LOVES to act like the animals. I've tried to capture some of them on video, but need to work on getting a video where she just does them for the camera. These videos were taken as she watches her video. She will often watch and then sit back and do the sign. However, she also jumps ahead and does the animal that Rachel (the Signing Time host) will be doing next. Allie has a great memory and has her favorite signs, so she sometimes skips some or simply just watches. It is also fun to watch her as she watches the videos because she will also act out other things - not just show the sign. For example, in the "Tiger" video, she first looks for her stuffed animal (which is a cat, but looks like a tiger - "Mr. Wiggles") and then on the video, they do a close up of a tiger yawning and sticking out his tongue, so Allie does that, too. They show the animals eating or opening their mouths, so you may see Allie trying to imitate those actions as well.

I'll work on capturing more of Allie's animal signs video. Until then... here are a few of Allie's American Sign Language signs for the Animals.

Can you guess the animals?

Go ahead... act like the animals.... it is fun!

A Thrilling Day

Today I got such a thrill when I went to meet with Allie and her Physical Therapist, Melissa. Allie got to try on some new splints (I think that is what we call them) for her feet. These will go inside her shoes and help her stand properly on her feet. She won't always need them, just now as she is learning to stand and walk to help her out. With her "loose" joints and low muscle tone, there are several things that can be done to help Allie learn to sit, stand up, stand and walk properly and these tools are just the next ones we will be using. Without shoes on, Allie - like many babies - rocks onto her heels and also rolls to the side of her foot. These splints - or braces - help to give her support so that she stands properly. We don't want to put pressure on the knee joints or other muscles in a wrong way, and this will help. Of course, you all know how little I know about such things, so I'm just hoping that I'm stating it at least close enough. The main point of this post anyway is not really about these little shoe inserts, but in the fact that we tried out a walker today and
Allie walked to me!!!!!!

The walker is a little big for her and a smaller one is on order, but when Melissa put Allie in it, she grabbed the handles like a pro and seemed to walk very fast right to me. It was thrilling to see the excitement on her face. I only had my phone with me, so I grabbed a couple videos and pictures. But, it seems like the videos can't be published here on the blog. I'm sorry. I will get more when we get the walker at the house and will post them at that time.

Allie was so proud of herself and so ready to do this. For weeks now she has watched the other kids run up to me to say hello or goodbye and I can see the look on her face of wanting to do it, too. Today, she had her opportunity and she loved it! She even threw in a little dance in the midst of it all.

I will post a lot more pictures and videos once we get the walker and practice with it. Allie is just growing so fast I can't even blog quick enough about it! Oh... and for those of you just wondering ... she now weighs 16.7 ounces! She has gained a bit since being sick in December and we are doing great with the milk! Keep lil' Allie in your prayers to gain weight and keep those GI doctors at bay. :-)

Love to you all!

Yakety Yak Don't Talk Back

You all requested it
and here it is... our
two year old talking back
- or signing back if you
want to be literal about it.






No is signed with your first two fingers tapping your thumb - no, no, no....

Stay tuned for our latest excitement - animal signs! Videos coming soon - along with more great stories from December.

December - whew a busy month for sure

Hello, everyone! We are actually still around and did not drop off the face of the earth. Good news to us for sure. It was, however, a very busy month for us - as I'm sure it was for you, too. We have so much to update you on, but where do we begin?

Of course, it was December, so there was shopping and Santa visiting and socializing. There was also about 3 trips to the Pediatrician only to be told Allie has a cold. He was very nice about it, but at that point I think I was hoping for something we could actually treat! There were 3 appearances of Pink Eye - the last occurring for Mommy and was actually confirmed. There was very cold weather and a trip to sunny Florida - only to discover it was cold there, too.

Many wonderful things were accomplished as well. Allie began pulling up more often during December and by the end of the month had it mastered and is very much wanting to walk on her own - although we aren't there yet. We are climbing like a monkey, however. And, speaking of a Monkey, our signing vocabulary has multiplied - and most signs Allie's parents and teachers can figure out - there are some that still leave us baffled, but she seems to know what she is saying. She is enjoying signing the Zoo animals, like Monkey, Gorilla and my favorites - Kangaroo and Penguin. She has also mastered how and when to sign "NO". Depending on my tone, she seems to know my next word after "Allie" is going to be "NO", so she will turn and sign it for me. Another things she seems to enjoy is she will start toward something she shouldn't be at - like the dog's water bowl for example - turn to look at me and sign "No, No, No" all while moving her mouth. So.... she has learned to talk back - or should I say sign back? She also likes to play with this to get me to chase her or stop her. Allie has also gotten a few more sounds to her "vocabulary" and I'm most certain I heard her SAY "Cracker", "Get Dressed", and "Block". But, we are still far from that happening regularly, I believe. We are pointing to pictures more frequently in books, following instructions more consistently and we are demonstrating a lot of 2 year old Independence. (I say this like it is fun, right?). Seriously, Allie is growing by leaps and bounds in many ways. We still struggle with her weight - as she remains just under 16 pounds, and being sick literally all month did not help it at all. But, she seems to be getting taller regardless. She has also begun to show a slight interest in food lately. Sometime in November (or October?) she decided she didn't want much food - crackers, cookies, veggies, meat... nothing really appealed to her. Luckily, she did drink her milk which is all the doctors really want her to have anyway.

Until I can post more specific stories and details of all the fun and holiday festivities, I wanted to give you all a glimpse into our month with this group of pictures. I hope you enjoy getting a glimpse into our December.

We hope you stay warm as temperatures everywhere are chilly! Today, our high here in Alabama was only about 25. It is a chilly 19 degrees now, but "feels" like 11 according to the weather channel. And Florida was getting sleet today! Oh my!
Love,
The Lovell Family