My Life: As mom to a child with "special needs"

Feeding Woes

2013-05-24T09:35:00.001-05:00

Hard to believe it has been two months since I was told that Kerstin would have a feeding tube placed, to safely feed her and to aid in weight gain. We have not had a weight check since it's been in place, but it is obvious she is finally gaining weight. Even after the ups and downs we've faced since she's been using the tube.

Since having the tube placed and we started her daily boluses of 1 full can of Pediasure 1.5 cal with Fiber four times daily with a 40 mL flush of water. We still had the constant chewing, smacking her lips and dry heaving which sometimes lead to her actually vomiting. Kerstin started to vomit so much, I took her to her pediatrician's office to make sure she didn't have a virus or cold. That weekend she was put on Pedialyte for the entire weekend. We were in constant contact with her doctors and nutritionist at Children's about these issues either via calls or emails and even videos. These concerns prompted her neurologist to order that she have an hour long EEG done to see if she was having seizures. This meant another trip of 124 miles one way to get the test done. This trip has been made 7 times in the past 2 1/2 months, with orthopedic appointments and surgery, casts changing, then cast removal, to neuro appointments and eventually another hospital stay and another surgery.

Got the EEG and the tech told me that she did the chewing/smacking routine during the test. A few days later, results showed that she was NOT having seizures during the study. Thankful for that, but what is going on, causing her to do this? Nutritionist decided and consulted with her doctor and nurse about a formula change. Her Pedisure was changed to Pediasure Peptide 1.5 cal, same feeding schedule. Still not working sadly. Now, nutritionist suggests that her feeding changes altogether! Really? How so?

Kerstin will need to have smaller boluses through the day, 10:30 am: 120 mL of Pediasure Peptide along with 40 mL water; the same at 1:30 pm, 4:30 pm and 7:30 pm; she will also get an overnight feed using a Kangaroo Joey feeding pump, to run 10 hours overnight, that would start at 9 pm in order for her to be off the pump around 7 am to get ready for school. The first night of use, my princess looked frightened at the sight of the pole and pump. We had to explain to her that she would not be stuck, and that it was not an IV. Told her that she would have her Pediasure going "down down into her tummy tummy.." ( our little sing song, while she's receiving her boluses ).

The new schedule did not work very long, the second night/morning, Kerstin started to vomit while the feed was still going. I'm so thankful that we have been blessed to have great people in our lives and a sister who is also a nurse. She told me to check with them again because with her having a bolus at 7:30 pm and going on her pump at 9 was possibly too much on/in her stomach. The 7:30 bolus was dropped and things have been going more smoothly. Granted, she is still doing the chewing/smacking, not as often. It is my prayer that these instances will cease altogether.

We finally got a schedule to wean completely off of the Topamax. I guess her neurologist wanted to see the results of the EEG before deciding to stop that seizure medicine.

We are on a journey! We are fighters and don't give up easily. The Lord is blessing us, Thankful for it.

More to come...

Wordless Wednesday

2013-05-08T17:34:00.001-05:00

Casts off..

2013-04-24T19:02:00.001-05:00

I wasn't sure if I really wanted to post these. Miss Kerstin's casts are off...they came off on April 9. Her doctor came into the room after they were taken off to exam her, he was pleased and stated, " Well, she looks good, no need for more casts, she's healing nicely, looks really good!" I'm looking at her scars and thinking, "Really??!?" I actually said that to him. I'm happy he thought so, but me, being mom, found my daughter's feet really hard to look at.

I must say now, two weeks later, she looks good and is healing nicely.

Unexpected happenings...

2013-04-03T18:20:00.001-05:00

Unexpected indeed! I had every intention of posting an update on last week of Kerstin's casts being changed and her neuro appointment. My, how things change. Last Monday, we went to Children's of Alabama for two appointments and ended up being admitted and she underwent another surgery....all in the span of a week.

So, casts were changed on March 18, appointment went well, ortho doctor was please with her surgical sites, even though they were not a pretty site for mom to look at. Her casts can come off on April 9 and doctor cleared her to return to school after spring break ( April 1 ).

The following Monday, we are back at Children's for an appointment with Kerstin's neurologist and to have a swallow study done. This began the day that I won't forget for a very long time. Things went well with her neurologist, he changed some seizure medicines, so we were to start the process of weaning off one and increasing the dosage on the new one. The day was a beautiful day, sunny, yet very windy. We had plans to go to the appointments and get to the nearest Target and walk around, as her treat for being in the house so much, not being able to go to school and mingle with her peers.

It didn't work out that way. We left neurologist's office, went up stairs for the swallow study...Barium mixed goodness =(( My sweet girl did not pass the study!! I was so hurt, so upset, I didn't even know who to be upset with and why! The team attending her study wanted my contact numbers to call me once doctors were able to look at her study. I had no idea that by the time we left the waiting room and were walking across the crosswalk to go home, my cell would ring!! Urgent call! The speech therapist stated that the study had been reviewed and that they needed to admit Kerstin to ensure that she was able to get the proper nutrition. She wanted to know had I left the hospital because the doctors didn't think it would be safe to continue feeding her the way she had been being fed. I lied!! The tears were burning in my eyes as I looked at my daughter, smiling and looking at the trees ( from the crosswalk windows), I told the nurse that we had left the hospital. She was so patient and caring, she told me that she knew we lived a few hours from the hospital and she didn't want us to get home and have to return to the hospital. I told her we would come back inside.

Here comes the whirlwind! Once back "inside", as we're walking to the admitting office, I could barely see and I was so overcome with so many emotions...I could no longer control the crying!!! The tears and the sobs escaped, I knew I didn't want my sweet girl to see me like this, so I stayed out of her eyesight. The nurses, bless them, they couldn't hold back the tears either! Not sure if someone told the 'clowns' to come visit her room, but they came in soon after she was admitted!

We were admitted, get this, her room this time, was two doors down from her room after her ortho surgery. Now, in come different doctors, specialists, anesthesiology nutritionist, nurses...I had to get out pen and paper to write down names and titles. The TV in the room has notes popping up to watch this video on seizures, watch this video on gastrostomy tube care... I must say they make sure you are knowledgeable about why exactly your child is in the hospital.

An IV is started to get fluids into Kerstin. Later in the day, a doctor comes in to explain the first step they're going to take. Placing my princess on an NG tube, then she would have and upper GI study done to see how things flow and to determine g-tube placement.

Day 2: NG tube is placed! Her nurse, Justin, was so thoughtful and caring! He came in earlier to tell me that they were going to place the tube, and that he thought it may be a little easy on mommy if I left the room for the procedure! My sister, whose a nurse as well, had warned me the night before, she said " I know how you are, and it can be a bit hard to watch it done." Justin told me to go downstairs and get breakfast and the he and another nurse, Amanda, would keep an eye on her until I got back to her room. They did, and when I reutrned my daughter has a feeding tube in her little nose. Hard for this mom to look at!

Day 3: Upper GI study. Determined that the NG tube was placed properly, Barium laced Pedisure was flowing in the right direction. She was rolled from side to side, on her back, on her side and back again.
Room filled once again with doctors, nurses, neurologist, surgical team, anesthesiology Yes, g-tube will be placed!

Day 4: Surgery day! One month to the date of her ortho surgery, my daughter is about to go for yet another surgery. So, we go down for the procedure...meet yet another team of really nice doctors and nurses, all confirming that "we're going to take care of Kerstin this morning,,," While enjoying a nice cup of coffee, I get a call to come to the desk, I quickly pour out the coffee, rush to the desk...Doctor is there, he says "surgery went well, she's in recovery, do you have any questions for me?" I did. I didn't know what to ask first, can she get in the tub, once her casts are off? Will she be in a lot of pain? Is this permanent? I have no idea how to feed my child through a g-tube!!! Dr. Martin, another reassuring person at the hospital, calmly answered my questions and told me that we were not leaving the hospital until I had training on how to, what not to, what to do if/when...

Day 5: Only clear liquids via her g-tube, Pedialyte and water, starting with smaller bolus feeds and increasing at each feed. Her midnight feed was not pleasant, she was so uncomfortable and grouchy. The numbness was wearing off and her belly was full to the rim with clear liquids. It took a while to get her settled, and later in the night/morning more of the strange lip smacking from Missy. Took a video to show her doctors. Later determined that she was in fact having a mild seizure. Neurologist informed me that when children start growing and meds are changed, if the new one is doing it's job you will see mild seizures in your child. He also said that if the child does not go into full convulsions, then the new meds are working properly. Catch 22? Not sure! He told me that as a parent you don't want your child to have seizures at all, TRUE, but you also don't want them so medicated that they are non-responsive and out of it most of the time, TRUE.

Day 6: Bolus feeds of Pediasure...mommy gets g-tube training! Kerstin is able to get bolus feeds of Pediasure and they will be introduced slowly, increasing at each feed. So far, so good. Thank God! It is also day 6, when mommy has to get away to the meditation room in the hospital. I'm Thankful to God, that surgery went well, I'm also thankful to Him that we're going to make it through this too! So, we get a visit from her surgeon's nurse, she is here to train me on some basics, and what to look for, what to do if it pops out, how to take the extension tube off, how to lock it, etc... Putting the extension tube on, made me feel so uncomfortable, she reassured me that if I gently hold the "button" and feel the little click, it will not hurt Kerstin. Okay! More training to come for mommy...I have to know how to replace the tube; Pray I can handle it.

Day 7: Easter Sunday! How did she do overnight? Fine! We are able to go home! Kerstin was so happy to see the trees and traffic, I thought she wanted to watch her TV as she normally does when we're riding...she was looking out the window with a beautiful smile on her face. No more hospital walls!! We are heading home!! The view was nice from the 10th floor of the Benjamin Russell Hospital For Children, but it was time to go!

We did go on strolls just to get out of the room, nothing like being outside of the building altogether!

After 7 days 6 nights in the hospital, we're back home, trying to get used to new routines! I know with all my heart we will make it! Things will get easier each day! This is all going to be for the best for Kerstin. She will thrive, she will grow stronger, she will be just fine! I thank God, for all of the doctors, nurses, and everyone we came in contact with. They were really nice and caring, so understanding and patient. It made our stay more tolerable. I've even nominated some for the hospital's Daisy Award, hope they're considered!

Surgery!

2013-03-03T11:53:00.000-06:00

Well, February 28, 2013 came quickly and has gone just as fast. At Kerstin's December 2012 check up with her orthopedic specialist, we were told that she may need to have surgery soon on her feet. Doctor told us that we didn't want her getting to a point where she wouldn't be able to comfortably wear shoes with them rubbing the bony part of her ankle and start to cause callouses, and we also didn't want it getting to a point where nothing could be done or the procedure would be extremely invasive.

So, about a month later my little princess was chilling on her bean bag after therapy and I noticed that her feet looked really odd, thinking and wondering if she was uncomfortable, hoping she wasn't. I emailed pictures to her physical therapist, saying that she was not fussy about the position and it didn't seem to hurt but it just did NOT look comfy. Therapist emailed me back, rather quickly, said that she was sending the pictures to Kerstin's ortho doc/nurse and that she was thinking we had put the surgery off long enough and it was time to go ahead with the surgery!!! I had to walk away from my daughter, I left her with one of teachers and went into the restroom, I could not stop the tears from falling. No one wants surgery, especially when its needed for your child.

After avoiding this procedure it seemed as if surgery day came fast. We had to have Kerstin at the Benjamin Russell Hospital for Children at Children's of Alabama at 5:30 am, which meant that we had to leave home at 3 am to make the two hour drive to get her there on time. It was such a quiet and chilly morning, we were surrounded by a lot of people that love, care for and support Kerstin. If they couldn't make the trip, we had tons of texts, Facebook messages, emails and calls.

Prepping for surgery! It seemed like every minute someone different came into surgery prep room 30, to tell us who they were, what their roll was in caring for Kerstin. We saw an orthotist, anesthesia tech, anesthesiology, nurses, and her ortho specialist. Didn't know that anesthesia came in so many "flavors". My moment of tears came when her nurse came and said to me that she was Kerstin's OR nurse and she would be taking care of my princess this morning, and that they were headed to the operating room. My heart seemed to skip a few beats to watch her take my daughter down that hall without me!

After 3 hours of surgery and recovery, my princess came out with her pink and purple cast and tubes for drainage. She looked good, just sleepy, her mouth was dry from the gas and tube they used during surgery. She was still numb from the nerve blocks they used to keep from having to give her so much narcotics right after surgery. The procedure: Bilateral Triple Arthrodesis ( more info here ), had been performed successfully on my daughter. Doctor said that he had to lengthen tendons/heel cord more on her left foot and that she would be more sensitive about that one ( that has proven true ).

Heading home, once mommy figures out how to maneuver and handle her newly rented wheels! Kerstin was sent home with a rented wheelchair because her legs need to be elevated as much as possible and especially when she's mobile ( in a wheelchair ). We figured it out and we set out for home.

Happy to be home, sweet home! Blessed that she is a tough little fighter. She tolerates her pains well and on Saturday didn't need much of her pain meds. This Sunday morning was not the case though, she actually cried from her pains. Made my eyes well up, but I held up. I don't want her to see my cry, especially not when she's still sensitive about what has gone on with her feet. I do believe and have faith that in just a matter of a few short days my princess will be fine and able to move her legs again without the pains she's getting when she moves them now. She has so much strength and courage, I wish I had the fight she has in her!

More to come...

Frito Lay Chippy Awards and Giveaway

2013-02-23T19:13:00.005-06:00

Check out this awesome giveaway!!

Tech in special education...really needed. Great site!

2012-08-27T05:53:00.001-05:00

I'm finding Technology in Special Education to be a great thing for my daughter, it still gives her the chance at learning in a fun and colorful way. Make sure you go check out these great sites. Techinspecialed and AppyMall .

Great Eucerin Giveaway from Lady and the Blog.

2012-08-10T11:20:00.004-05:00

Check out this giveaway from Lady and the Blog. "Healthy Skin from A to Z"

Maxim Hygiene Giveaway

2012-07-29T18:32:00.003-05:00

Check out this awesome giveaway from Maxim Hygiene!

The Coupon Centsation: Win a NEW iPad

2012-06-19T14:52:00.001-05:00

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Wordless Wednesday

2012-03-28T13:33:00.001-05:00

I CAN'T...

2012-01-28T19:34:00.000-06:00

What a title, right? Especially when we are in a day and age when "can't" should NOT be an option for us nor our children. I've had this on my mind for a few days. I'm always hearing other moms talk about what they can't get their children to do, how they are constantly telling them to go do this, or go do that. I hear them talk about how it's hard to get them out of bed for school in the morning and how they just won't shut up, clean up or whatever it may be. I sit back and reflect what it would be like for ME to have to constantly stay on Kerstin about getting dressed, taking a bath or cleaning her room. How it might feel to tell Kerstin to be quiet. I can't!

I can't tell Kerstin to get up and get dressed, I have to do that for her. I can't tell Kerstin to clean her room, she doesn't mess it up, even when her cousins visit, they clean it or I'll do it. I can't tell Kerstin to go to her room, unless taken, she's not able to voluntarily. I can't tell Kerstin to be quiet, her coos, aahs, babbles and laughter is music to my ears! I could go on and on listing the negative I can't's...there is no point in that. After 10 years on this journey, my life has changed for the better. My eyes, heart and mind are opened to new and challenging this. I've been forced to learn about things I had once never given a thought. For that, I am THANKFUL to God!!!

There are some things that I know I definitely can't have...I can't let life go by for Kerstin and myself! I can't let or allow my daughter to be sheltered from LIFE. I can't let Kerstin's disability stop her from being a child. I can't let society and certain "professionals' tell me what's best and right for my child. I can't let negativity and ignorance keep me from enjoying my daughter and her enjoying LIFE. I can't let anything or anyone stop her from making strides and progress! I can't let a diagnosis determine her boundaries...the possibilities are endless...life is to be lived and enjoyed!!!

Weight...among other things!

2012-01-23T13:25:00.000-06:00

Happy New Year!! This is the time of the year when we start seeing all the commercials promoting diet plans, exercise equipment, quick weight loss pills, shakes, sprinkles, etc... We've all seen them, and most of us adults are tempted to try them because we need to or just from the mere popularity of them. Some of our children could even benefit from a form of weight loss that is healthy and for life not fad.

My little one is the complete opposite, and on a mostly liquid, soft or puree diet; we've been on a battle with weight for some time now! God knows I'm doing my best and will continue to do so. It just seems so frustrating when it seems as if my best isn't close to being enough. In my eyes and mind! In all of this, I can say that she has gained 1 pound from her December check to the January weight check. I am so thankful to God for that, it just doesn't seem like it's enough for me though.

It seems that way because we've had to deal with the development of a pressure area on her rear. Due in part to the weight loss and a bony prominence! You don't know the tears I've shed in light of this. We've had to go get the cushion in her wheelchair "feathered" and cut to have a softer spot. Her position is changed every so often, she's kept dry...things I was doing and it still happened. OT doesn't want her seated on a "doughnut cushion" because of the risk of pulling and causing even more irritation.

Through all of this, we're still prayerful and very trusting that tings will continue to work in our favor. Kerstin WILL continue to gain weight, the pressure area will clear! I am so proud of my daughter and love her dearly! She is making great strides at work on her Dynavox...had to treat her to something from her fave store, Target!

A message from Kerstin! ;))

2012-01-17T17:49:00.002-06:00

Hello,

I’m a member of the Junior Leadership Team at my school and in a few months we will be embarking on a trip to our nation’s capitol. This 5 day 4 night trip will include tours of the MLK, Jefferson and FDR memorials, the U.S. Capitol Building to meet some of our representatives, an outside tour of the White House, Arlington National Cemetery, the Washington National Mall and other sites.

This trip will give us the opportunity to see firsthand monuments of people that have done extraordinary things to get our country to where it is today, and to also see the places where our lawmakers work on our behalf.

This trip takes place at the end of April and the cost is $550.00; it covers the cost of my travel, room and other expenses. I am asking for your support in making this trip possible for me. Your generous sponsorship would be greatly appreciated. Whatever amount you are able to provide would tremendously benefit my educational experience.

You can contact my mom, Mattisa at kwsmom@gmail.com to let her know of your generosity! You can also make a donation via PayPal, at the "Trip to D.C. Donate" button to the left.

Sincerely yours,

Kerstin &

Just sharing...Someday At Christmas!

2011-12-20T18:29:00.001-06:00

My little princess loves this time of the year! I still can NOT believe that my daughter turned 10 this past Saturday! Mommy is still in shock and awe! She has been enjoying herself with all the Christmas cheer; the cartoons, the movies, the decoration and most definitely the music...one of her fave albums is The Jackson 5 Christmas, especially "Someday at Christmas"!

To you from Kerstin! Merry Christmas!!!

Happy Thanksgiving!

2011-11-24T11:24:00.000-06:00

Let's give THANKS, not just because the calendar says so...give thanks every day!!!

Wordless Wednesday =)

2011-11-16T13:00:00.000-06:00

Another day...another weight check...

2011-10-14T21:31:00.000-05:00

Wow, it's really been a month?!?! Sorry, it's been so long! I have bee working and praying, seeking ways to get my daughter's weight back up. I am convinced now that it has to be the medicine she is on for seizures.

She had yet another weight check today and is down a few more ounces from September 9 =( This is heartbreaking, especially when the nutritionist keeps bringing up "feeding tube"..surprisingly I had the strength to tell her out right today, " No feeding tube"!!!

I'm on a mission now, (1) to get my daughter on another seizure, one that will not cause weight loss and loss of appetite (2) find all sorts of pureed meals and recipes that are high in calories and (3) GET MY DAUGHTER'S WEIGHT BACK UP!!!

More to come...

The week did not end on a good note...

2011-09-10T21:35:00.000-05:00

So, we've decided to keep therapy days on Friday's, that will give the princess a chance to rest and regroup. Not going back to school the next morning sleepy and groggy from the exhaustion of school and therapy the day before.

This past Friday, she also had a weight check before therapy...get there and she has LOST about 10 ounces :( So not what I wanted to or needed to hear!! I was distraught and thinking what can I do ( suggestion are greatly appreciated ) to get my daughter to gain weight and maintain it! I was told by one of therapists that added coconut oil to her foods ( pediasure ) would help to add extra calories. I've got to get a food processor and make her purees myself! I just feel so helpless and not sure where to start and what to do...giving up is NOT an option though!!

We're going to make it happen and get through this too.

More to come...

Another school year underway!!!

2011-08-23T19:27:00.000-05:00

YES, it's that time of they year...school has started and my sweet pea is getting on up there in age!! Stull unbelievable to me that she will be in double digits in December...*tear*! I have a beautiful little lady in the making!

Her first week has already been busy...school and therapy! Here's a first day of class photo!!!

And a therapy photo...petting "Brodie" after they worked so hard.

( Brodie is an Easter Seals therapy dog ). You can also join a great cause and help raise money for this type of service and so many others to help benefit children and adults with disabilities. Join a walk/team or just make a donation: Princess Kerstin's Team.

More to come...

Pulling mommy's leg!!!

2011-08-11T22:56:00.000-05:00

Tomorrow should be another interesting day of therapy! Last week my little princess had therapy, but my sister went along with us to do some back to school shopping! What would you know...the princess got to therapy and decided she was NOT having it and 'pretended' to be so sleepy and totally not in the mood for her session! Therapist came back out with her and told me that she seemed so groggy and not up to therapy that particular day...she was looking the part!!!

About an hour later, after lunch, we arrived at Target...ALL SMILES!!! She was literally in her "happy place"!! We were in there longer than usual because of back to school shopping for her and not once did she have to be re-positioned in her chair or anything...cool, calm, and collected! :-)

Gotta love MY PRINCESS!!!

More to come...

Tears!!!

2011-07-28T11:56:00.000-05:00

Wednesday, July 27, 2011, was a stressful morning for me...it took everything in me to hold it together until I was able to get to another rooom away from my daughter. Her heel on her left foot still has theis little spot from the rubbing against her night time splints back in June and her right ankle was extrememly red without having the splints on the night before. It was so red and actullay peeling...BROKE MY HEART to see this...I couldn't get away from my princess fast enough to get to another to cry!!! I eventually go it together to give her a nice warm foot rub and massage with Shea butter.

I know with the redness that isn't fully clearing, it is almost a give that she will be undergoing that surgery this fall/winter. We are not giving up on anything, we are still moving forward...taking each day one step at a time.

More to come...

Parents Magazine: One year subscription ONLY $4!!!

2011-07-08T12:19:00.000-05:00

Who doesn't need parenting tips and advice? Ideas for crafts and and other activities to make life fun and enjoyable for you and your family! Well, you can get Parents Magazine for an entire year for ONLY $4!!

Click here, enter promo code PX0946, fill in your info to have your subscription delivered.

Wordless Wednesday

2011-07-06T20:39:00.000-05:00

I never seem to remember! Oh well, MY Princess!

More to come...

Weight is coming back up!!

2011-06-30T11:40:00.000-05:00

So happy, that on yesterday my precious little one had gained a pound of her weight back! Still not what I expected, but it is a step in the right direction. She also had occupational therapy yesterday and did really well! So happy for her, for us!! We are going to relax again today and enjoy the blessing of a air conditioned home!!

More to come...