Seven Snippets Sunday

 

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Tennyson had her first hippotherapy session last week. I'm so happy she was able to go. Her school had her moved to a different date so she wouldn't have to miss it because of her upcoming surgery. I sent the flip video camera with her to school and they took great video. I couldn't help but giggle when I saw how tiny should looked on the horse. Take a look!

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A few weeks ago, I received an e-mail from Pasadena Child Development Associates. They are a non-profit agency based in Pasadena, California and provide a variety of therapy services for children, parents, and professionals. Their list of services is impressive. They requested to use one of my photos of Tennyson to advertise an upcoming workshop on transitioning non-oral to oral feeding. If you are a special needs parent in southern California, they may be a great resource of information for you. You can check out their September online newsletter that Tenn's tummy was featured in here. Their website is www.pasadenachilddevelopment.org.

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Today is Microcephaly Awareness Day! Microcephaly is a condition Tennyson has been diagnosed with because of her head circumference. Her head is the size of a typical 3 month old child. It was easily one of my biggest worries during her first year. Now, I hardly ever think about it. Especially since she has the prettiest, curliest hair that covers her cute little head. (Have I mentioned Tennyson has never had her haircut - ever!? I think the time is near...)

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I've set up a Facebook fan page for the blog. I have a nifty little button on the right side of the blog you can click on and it will take you straight to it! We would love it if you would "like" us. I want it to be easy for you to get the latest and greatest news from the blog, and I will link each post to the Facebook page. Plus, you get to see cute "bonus" pictures throughout the week like this one that I shared on the 3rd anniversary of her NICU homecoming.

 September 27, 2009

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If you are like my husband and don't have Facebook, we still make it easy for you to get the latest blog update without having to check back here. Just type your e-mail address in the box on the right hand side and Tenny can arrive right in your inbox. I just signed my husband up for this so I could make sure it worked, and it does.

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Neither Tenny nor myself have any doctors appointments this week! It's a miracle!

 



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Do you have a blog? If so, I would love it if you shared it with us! So many people take the time to keep up with Tennyson. I would love to do the same and learn more about our readers.

I hope you all have a great week!

Amy

tennsense@gmail.com

19 Days and Counting (until Surgery)

On Monday, Tennyson had an appointment with her Orthopedist. He has been following Tennyon for about a year and a half and he sees her every 6 months or so. He mostly monitors her hips and spine. Kids and adults with CP often have trouble with their hips. This can mostly be attributed to the fact that they don't bear weight normally, as well as muscle tone issues.

When we arrived at the appointment they took her back to get an x-ray of her hips. This was the first time I couldn't go with her since I'm pregnant. We waited and waited and waited. Two hours later, we finally got to see the doctor. The x-rays weren't good. He had brought in her x-rays from last March to give me a visual on how bad her hips have gotten, just in these last few months.

Her hips are not fully in the sockets. In fact, they are nearly dislocated. Each hip is about 70% out of the socket. There are a few reasons for this:

1. Tennyson does not bear weight on her legs. Typically, as a child learns to stand and walk, the ball of the joint "carves out" the hip socket and fits snugly inside of it.

2. Her muscles are very tight. Both her adductor muscles and her hamstring muscles are restricting the hip from being able to move fully into the hip socket.

Your adductor muscles are located on the inside of your upper thigh (where you groin is).

If your adductor muscles are tight, it can pull your legs together (and thus your hips away from the socket) and it can cause "scissoring", or criss crossing of the legs.

She needs to have surgery to correct the problem. It's been scheduled for October 16th.

She will have bilateral adductor release and bilateral hamstring lengthening surgery. I'm not going to lie, I'm not happy that she has to go through this surgery. She's pretty young to have this surgery. It's a soft tissue surgery. So no bones will be involved. The hope is that once these muscles are cut and "released" the hip will be able to move fully into the socket. Her doctor said that 65% of kids who have this surgery won't have to have the bone surgery later on and this solves the problem.

That's not even the crappy part!

She has to be in full leg casts for 3 weeks following the surgery! Followed by an additional 3 weeks of removable braces. She'll look something like this (although I anticipate her legs will be stretched much farther apart in a "V" shape):

 

She'll have enough room for me to put a diaper on her. I haven't yet figured out how I'm going to dress her. I think I might have to cut pants and shorts and put snaps on them so they can fit over the bar. And then there's Halloween - I'm going to have to get really creative with her costume this year.

 

She'll be in the hospital for about 3 nights. I've read that it can be a painful surgery, followed by muscle spasms. I pray she will recover quickly and with as little pain as possible. The doctor said she should be able to return to school after about a week.

 

I'm still mentally preparing for this next "adventure". If you are a parent who has gone through this surgery with your child, I'd love to hear from you!

 

Amy

 

tennsense@gmail.com



{Pregnancy Update} Week 20

I'm officially 20 weeks pregnant! Only 5 (or less) months to go! This one seems to be going by much more quickly than when I was pregnant with Tennyson.

I finally felt her move last week! Every night, after Tenn is in bed, and I finally have a chance to sit down and put my feet up, she lets me know she's awake. Just this morning, I felt her move before I got out of bed. So, she's definitely getting bigger and more wiggly. I love it! When Tenn was born and my pregnancy ended so abruptly, feeling a baby move inside of me was something I mourned. I missed it terribly. So I am really loving and appreciating all the sweet kicks I get to feel.

Changes to report:

• I've finally gained nearly 2 pounds. I was much more nauseous this time around. It didn't really let up until 16 or 17 weeks, so I didn't have much of an appetite. Babycenter.com says that I can expect to gain a pound a week from here on out. I don't weigh myself though, so I'll just keep the weight checks at the doctor visits. No cravings to report yet.

• I started to have nose bleeds last week. They are so annoying. They seem to be fairly common in pregnancy, but my doctor had me get a blood draw just to make sure all is well.

• I got a flu shot. I'm glad I was able to get it. Tennyson is next. Apparently we need all the help we can get to stay healthy this season. I hope to get the pertussis vaccine as well.

I follow this great blog called "Johnny In A Dress". She has a son with CP, and she sews the most adorable things. She recently had a little girl (she named her Hollis - so cute!) and she did a post on all the adorable things she made for her. You can check it out here. Aren't they adorable!? I'm going to be sewing non-stop once we pick a name!

Speaking of baby names... so far, The Husband has not liked any names I have thrown out there as possibilites. We want to pick a name soon so that we can start preparing Tennyson (and I can start monogramming!). It's been hard to find a name that can follow "Tennyson". We like our girl names unique (obviously), pretty but strong, and not made up. Any suggestions?

Here are the names that have not made the cut (unfortunately):

Briony
Delaney
Finley
Henley
Emerson
Kenley
Lucy
Whitley

Eliza

Charlotte

Willow

Rowan

Sophia

Christiana

Felicity

Vivian

Brenna

Emmalynn

Piper

Cora

 

That's my update for ths week! All is going well. I'm feeling good other than some random round ligament pain here and there. I'm loving that my belly is growing bigger. I'm not uncomfortable, and now people can tell that I'm pregnant!

Thanks again for all of your kind e-mails and prayers. They are so appreciated!

Amy

tennsense@gmail.com

Seven Snippets: All About Tennyson

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Last Sunday, Tennyson woke up with a cold. I hate when she gets sick. It's never just a simple cold. It hangs on and she gets congested and she's just plain miserable. I grabbed the sodium chloride and nebulizer as soon as the runny nose started. If you remember, a cold she caught last May, landed us a 3 day stay in the hospital. I kept her out of school last week and took her to the doctor on Friday to get antibiotics. She seems better, but still has a cough. Hopefully she is just building up her immunity for the upcoming cold and flu season.



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On Friday, she also saw her cardiologist. We have not visited the cardiologist since she was about 15 months old. At that time, she was being followed to monitor a patent foramen ovale (a hole between the upper chambers of the heart that doesn't close soon after a baby is born). Once the PFO resolved on it's own, we thought we could cross cardiology off the long list of doctor appointments. We were wrong. Unfortunately, the micro-duplication on her 19th chromosome puts her at an increased risk for heart complications due to the genes that she has extra copies of. She needs to have a yearly echocardiogram to monitor her heart. During the ECHO on friday, the results were normal. Her heart is functioning normally, and the anatomy is all normal. The only caution is that the thickness of her heart is on the high end of normal. She will have to be monitored to make sure she does not develop hypertrophic cardiomyopathy.

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I ordered a Pumpkin Pack for Tennyson! These are adorable backpacks that are modified to hold feeding bags and pumps. I've been sending Tenn to school with her pump in a lunch cooler, and I hang her feed bag on the back of her adaptive stroller. Sometimes it works fine, sometimes it doesn't. The extra tubing is a pain to wrangle. This will hopefully make everything easier. Her pump and feed bag will be held in the pack. I had it monogrammed with her name on it. I'll let you know how it works out for us when it arrives. I've heard nothing but good things about them. I'm pretty excited!

Image courtesy of Pumpkin Packs (www.pumpkinpacks.com)
 

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We are planning on banking the cord blood from Baby #2. Our hope, (as long as Baby #2 doesn't need her cord blood), is that Tennyson can use it. We were not able to participate in the current clinical trial at Duke because we didn't bank Tennyson's cord blood. Hopefully, a clinical trial involving sibling cord blood donation is coming. We will continue to pray this is an option to help Tennyson in the future.

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Remember last January when Tennyson got a lumbar puncture to test for cerebral folate deficiency? (and the super emotional post that followed when we found out she was going to be treated for it?) Other than some increased awareness and head control, it didn't bring the results we were hoping it would. It's understandable - medically speaking, Tennyson has a lot going on. We're going to increase her dose of leucovorin and see what happens. We have another medicine that we can try as well, to see if that shows better results. We are also looking into traveling to Atlanta to visit a clinic that specializes in treating cerebral folate deficiency.

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Tennyson has a new favorite activity: drinking water. She loves it! It has taken her a long time to get to this point. She is beginning to lose the oral defensiveness, and loves to try tastes of drinks, broths, and purees. Though her favorite - by far - is water.

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We started Tennyson on a 3rd seizure medicine about a week and a half ago. The new medicine is called Clobazam (aka Onfi). It will take month to titrate up to the full dose. We are going slow in order to minimize the sleepy side effect if has on her. So far, I'm pleased with it. I've noticed a significant decrease in her seizure length and frequency. She had started to seize frequently when waking up from her afternoon nap and when I put her in her carseat. Since we started the medicine, she has not had a single seizure when waking up from her nap. She has had 2 seizures from the time we began the medicine, but she is not at the full dose yet, so I'm not disappointed.

Amy

tennsense@gmail.com

An Easy Button - Finally!

Okay, so it's not a "button" - but it will definitely make life easier! I hesitated to go through the process of getting permanent handicapped placards. I had only heard bad experiences that consisted of multiple trips to get the right forms, to then have to get them signed off by a doctor, and then needing to get an ID card for the child. These days, I just don't have the extra energy to fight with insurance companies - and least of all the DMV, so I've been picky with choosing my "battles".

Had I known how easy the process was here in North Carolina, I would have done it a year ago. I printed off a form online, took it to one of Tennyson's many doctor appointments (which of course they signed - no questions asked), and had been hanging onto it for about 3 months.

I finally had the energy. I walked in to the DMV, handed them the form, paid $10, and they gave me two handicapped placards. They are good for 5 years. FIVE YEARS. Hallelujah!

The woman who helped me was even nice. I was just waiting for something to be wrong, or not filled out right. I couldn't help but be in a great mood when I left there. Nothing has been that easy in a long time when it comes to trying to get something for Tenn.

I can't wait to use my "easy button"!

Amy

tennsense@gmail.com

{Pregnancy Update} 18 Weeks

Monday marked 18 weeks for this pregnancy. It's hard to believe that I am nearly to the halfway point of this pregnancy.

This morning I had the anatomy ultrasound. I was hoping to be able to find out the gender, but more importantly, I wanted to see the baby is growing well and is healthy. I was somewhat nervous as I drove to Chapel Hill this morning. I have not felt the flutters of this baby growing inside of me yet. I started to think about all the bad things they could tell me and I started to get overwhelmed. I prayed about it and took comfort in knowing that whatever happened was in God's hands and out of mine.

I really liked the sonographer I had for my last ultrasound, so I requested her when I checked in for my appointment, but it was her day off. Bummer. Sometimes it's hit or miss with sonographers. They see so many babies everyday that they sometimes don't get excited the way we do as expecting mothers - but I got lucky today. I always want to make sure they know my history with Tennyson. She knew the basics, but I filled her in on the details and jokingly warned her that I ask a lot of questions. I'm such a different pregnant woman this time around.

I know most women think of this ultrasound as the gender reveal. That was just going to be a bonus for me. I wanted to know how the brain looked and if she saw a choroid plexus cyst; if the heart had four chambers; if the baby was growing on schedule. I wanted to know the placement of the placenta and to know if she could see how big it was; I wanted her to check for blood clots in it. I asked about the umbilical cord...all the things that went wrong and unrecognized with my last pregnancy.

I let her know I had not felt the baby move yet. She told me that it was most likely because of the positioning of the placenta. It's right on the top of my belly, so this baby is going to have to get a little bit bigger (or kick harder) before I feel the flutters.

As she went through her ultrasound routine, checking all the body parts of the baby, I got to hear the heartbeat (a strong 154 beats per minute), see the baby wiggling around, see hands and feet, and just as she was about to tell me the gender, I beat her to it. I knew right when I saw it on the screen. I said, "Oh! It looks like a girl!". She said, "You're right. Wow, you're good."

Overall, everything looked great with our sweet baby girl. Today I am 18 weeks 3 days, and she measured exactly 18 weeks 3 days. My due date is February 11th.

I will have to return in a month so they can get a better look at her heart. In most of the images, her heart looks perfectly healthy. But there were a few questionable images that made the doctor want to make sure she doesn't have a Ventricular Septal Defect (VSD). She assured me it was not something that is life threatening or anything that would affect her developmentally IF she does have it.

My Husband called me after the appointment. I said, "you know how you're outnumbered right now with Tenny and I? Well, you're about to be really outnumbered because we are having another girl!". He was excited. I don't know how people have the patience to wait for gender reveal parties, or any other cool gender reveal ideas I've seen on pinterest. Once I talked to my husband, I made about 20 phone calls. People were waiting and I was excited to tell them!

We are excited for another girl! I would have been happy for a boy as well, but I'm really happy the 5 giant bins of girl clothes I saved from Tennyson will be put to good use!

Tennyson is going to be an awesome big sister.

Amy

tennsense@gmail.com

Tennyson's 3rd Birthday

Last Saturday was Tennyson's 3rd birthday. She had a great day. We held her birthday party at a local pool since she loves the water. She had about 13 friends come. Everyone had a great time swimming, snacking, and eating yummy cupcakes. She didn't get to have a birthday party last year because she was sick and had just been released from the hospital, so it was important to make sure she had a special day this year.

Each year on her birthday, I can't help but remember everything we went through the day she was born. This year, as I reflected, the sad feelings that used to be there when I thought about her birthday were mostly replaced by happiness. It was nice to just focus on celebrating her this year. Each year is another blessing. She continues to open our minds and fill our hearts with complete joy.

It's amazing to look back and see how far she has come:

Tennyson on her birthday - September 8, 2009



Tennyson at 2 days old on September 9, 2009

 

3 years later - September 8, 2012

 

 She waited patiently for her friends to arrive while we set up her party room:

 

 

 

Finally swimming with her Uncle:

 

 

Yummy cupcakes for her friends:

 

 

So tired after her party:

 

 





 Happy 3rd birthday sweet girl!

 

 

Amy

 

tennsense@gmail.com



Seven Snippets - A Little Bit of Everything

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Did you notice the pretty new blog template? I won it! Designer Blogs does a monthly giveaway for one of their Templates each month, and I was the winner for July. I have been dreaming of updating the blogs look since I started last December, and I was so excited to win. I never win! Check them out! They have great designs.

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Since last April, we've been battling to keep Tennyson from losing weight. It seems whenever seizures start up, vomiting does as well, and it's difficult to keep her hydrated and meet her calorie needs. Last April she was around 26 pounds. Two weeks ago at her weight check, she was down to 23 pounds. Seizures have been showing up every few weeks, but this weekend she had them daily. We see the neurologist tomorrow and are hoping to try yet another medicine to get rid of these stupid seizures once and for all. She also has a weight check to see if she has gained anything in the last few weeks. I hope she has!

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We have been discussing a blended diet with her GI doc, feeding therapist, and dietician for some time and we are finally at a point we can begin. Tennyson's diet has always been formula based, and she's never had a diet of real food. My Mom bought a fancy VitaMix blender for us to have for the transition. We should be starting within the next week or two. Her dietician will be creating a few starter recipes formulated specifically to meet her nutritional and calorie needs. It will be more work on my part, and more expensive since we will be buying natural, organic, fresh foods, but I think we will see it pay off in Tennyson's overall health.

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Tennyson's school has arranged for her to do theraputic horse back riding! She will get to go once a month from September to December. I'm so excited for her. Horse therapy, also known as hippotherapy, is great for children with cerebral palsy.

"The idea behind hippotherapy is that the horse's movement provides a sense of rhythm to the rider as well as forces the rider's torso and hips to align and move in the proper physical way. Hippotherapy for patients with cerebral palsy essentially improves rhythm and movement, encourages step spacing (horses step with approximately the same frequency as humans), and promotes normal off-horse movement by training natural motor responses." - The Cerebral Palsy Source

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Tennyson turns 3 years old next Saturday! We are so blessed she is ours. Life is good! 

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We had Tennyson's I.E.P (Individualized Eduacation Program) meeting last week. This meeting outlined which services Tenn will receive, and how often she will get them. I've heard many horror stories about these meetings, but I wasn't really worried about Tennyson's. I knew I wasn't going to be fighting for services. Her school, teacher, and therapists all want the best for her. There were many evaluations of Tenn leading up to the meeting, and I requested copies of them prior to the meeting. I met with the psychologist before the meeting, and I'm glad I did. The only emotional part of the day was hearing the results of her evaluation. Hearing her use the words "profound" and "severe" to describe Tennyson brought tears to my eyes. We obviously know that Tennyson has extreme delays, but hearing someone else point out just how far behind she is, was just plain hard.

 

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I am officially 17 weeks pregnant! I can't believe I'm almost to the half way point of this pregnancy. In the last week or so the all-day-sickness has let up and food actually sounds appealing again. I don't remember being sick for very long with Tennyson, so part of me is thinking this baby is a boy. But then again, I thought Tennyson was a boy, so I probably should be thinking I'm having another girl. We find out the gender on the 13th. Only a few more days!

Here's a cute picture of Tenn...just because she's so adorable!

She makes me smile every single day

 

 

For more Seven Snippets, visit Bringing The Sunshine!

 

 

Amy

 

 

tennsense@gmail.com