G-Tube Surgery

Oaklynn had surgery to have her G-Tube placed on Tuesday September 25th.

We left at 5:30am and dropped little sister off at my parents and went to the children's hospital for our check-in time of 6am.

When we got to the hospital, we registered and were taken to a room where they got information about Oaklynn and had us change her into a gown.

We waited in that room for over an hour, until our surgery time of 8am. They then took us back to the procedure room. I sat on the bed and put Oaklynn down on it. They then put the mask over her face while we talked to her and sang to her. She was smiling while the mask was on. The mask smells very good (like strawberries) and Oaklynn kept sticking her tongue out trying to taste it, lol. Once she fell asleep, we went to the waiting room. 

We sat there for only about 20 minutes until the surgeon and the GI came to tell us that everything went OK. They were able to find a good spot to put the button and everything went great. They also took a biopsy of her esophagus because the GI wanted to check some things and figured she would do it while she was already in there.

Here is how they did the surgery...

What happens is they put her to sleep with gas. Once she is asleep, they int-abate her and then stick a tiny camera into her tummy through her mouth that has a flashlight on the end. They look in her tummy for a good place to put the button. Once the GI finds a good spot, she shines the flashlight from the inside of the stomach to the outside. When the surgeon sees the light, she sticks some kind of wire into the stomach from the outside. The GI sees the wire and grabs onto it with her scope. They pull the wire out through the mouth (so the wire is now going from her mouth, down into her tummy and out her tummy). They then attach the button and pull it down through her mouth and then pull it out of her tummy with the wire. Then they pull something that opens the button up and puts it right in place. If the GI wasn't able to see where to put the button from the inside, she would have had the surgeon take over and the surgeon would have had to make a few incisions and stick a couple cameras in to look around and find a good spot to put the button (they would have had to do this if the stomach wasn't in the right place or some organs were in the way of placing the button).

BELOW PICTURE IS NOT OAKLYNN.
This is a picture I found online. It is what it would have looked like if they had to make incisions in a few places and go in that way. We are VERY grateful they were able to find it from going through her mouth!

AGAIN, ABOVE PICTURE IS NOT OAKLYNN

We then got to go back to the recovery room to see her.

 She started waking up faster than expected, so they gave her a little more medication to keep her out a little longer. They let me pick her up and hold her to help comfort her.

We waiting in the recovery room for about an hour until we got admitted into the hospital. They then took us to our room to get settled in. Oaklynn fell back to sleep in my arms so we just cuddled on the bed for a while. My dad came to the hospital to hold Oaklynn so we could go get something to eat. When we got back, she was awake!

We just hung out in the room all day and watched TV. They didn't want to give her any food by mouth or tube yet. They ran IV fluids all day and through the night. Here are pictures of her new tube...

 Oaklynn got to hang out in bed and watch Mickey Mouse Clubhouse with Daddy all day

 Grandma and Grandpa Forsgren sent Oaklynn a "Get Well" balloon and a teddy bear (they also sent some goodies for Austin and I . . . THANKS)

I shared a bed with her over night. The pain medication kept her up and she wasn't able to sleep very well (plus she wasn't in her own bed). She kept waking up really scared throughout the night.

 The next day (Wednesday) we started fluid through her tube. They started with a round of pedialyte and did it very slowly to make sure she could hold that down before we started formula. About an hour after the pedialyte was in her system, they started on a low dose of the formula. 

Once we were done with that feeding, we had to wait 4 hours to make sure she kept it in her system. While we were waiting for the time to pass before we started the next feed, Oaklynn took a nap . . .

Aunt Shay came to visit (my sister) . . .

and we met a dog named Riley . . .

Finally we got to start the last formula feed. If all went well with this one, we got to go home! She watched Mickey Mouse Clubhouse during the feed . . .

and took another nap . . .

Once the feed was done we started discharge paperwork and packed up. We finally got to leave at 6pm on Wednesday night. Oaklynn fell asleep as I was pulling out of the hospital parking lot. She went to bed when we got home and had a few night terrors that night. 

When she woke up the next morning, she was sore and in pain. We had 2 therapies that morning (taking it easy) and she had two of her cousins come over to play. She LOVED playing with her cousins. They always know how to make her smile.

She had an OK day. She didn't like when we picked her up and moved positions, I think it hurt her. She was holding all her feeds down and doing great. We put her to bed that night and she fell asleep quickly. When I checked on her in the video camera, I noticed her sheets looked darker in a spot. We both ran in a she had thrown up all over herself and her bed and was just lying there in silence. We felt horrible and were so sad that she was lying in her throw up. I took her to give her a bath and when I did, I noticed that she also had diarrhea. Once she was clean, we gave her some pedialyte through her button and she fell asleep in my arms. 

The next morning (Friday) she was VERY happy . . . full of smiles. We were more careful that day about how to pick her up and carry her to not hurt her stomach. She did great taking her feeds and even ate a little by mouth. She had a great day until about 5pm when she threw up a TON during one of her feeds.We bathed her again and gave her some pedialyte and let her play in her room. I called the doctor and she said that if Oaklynn wont eat anything and goes diarrhea again, we need to take her to the ER. After we ate dinner we went in to get her to try one more feed before bedtime (we were going to try to do it slower than usual). When Austin went in to get her, she had gone diarrhea. We cleaned her up and I cuddled on the couch with her while Ausitn went to get more pedialyte. While he was gone, she started falling asleep while we were cuddling so I put her in bed. She was asleep within a couple minutes. 

Saturday morning I gave her a breast milk bottle when she woke up and an egg. I then let her play until she started doing her tired moan. I put her in bed and she started crying really hard. I went in and gave her a couple more ounces of breast milk through her tube really quick. She then started SCREAMING. I let her cry for about 20 minutes but she wasn't calming down so I gave her some tylenol. She screamed for another 20 minutes and then finally calmed down and went to sleep. She slept for 3 HOURS (she usually only takes a 30 minute nap). Gave her a pedilyte feed after waking up and she held it down good. A few hours later gave her a piece of bread and another breast milk feed and she did great. 

She got a package in the mail from her Grandma and Grandpa Cooley (and Great Grandparents, Aunts, and Uncles). It sure did cheer her up!

She went to bed early Saturday night and slept great.

Sunday she was able to eat some more food by mouth. Gave her one formula tube feed in the middle of the day and she didn't throw it up (YAY). She was very sore and in pain today but overall was a MUCH better day than the last few. Lets hope we keep going up hill from here. I know it will take a while till we get the feeds down and we can start doing bolus (a large amount and quicker than a pump feed) so we can get these feeds done faster.

I am so proud of her for being so tough. She never ceases to amaze me and teach me so much.

Speechless

This video brought tears to my eyes. The love these kids have for their sisters is amazing. I am excited for my kids to love on their big sister. Listen to the little boys poem about his sister... such sweet words. 

I want to share the poem with you again because it was so sweet...

Speechless

My sister

She is strong, but silent.

She will grow, but not grow a voice.

She needs help, but helps others more.

Is poetic, but can not make a rhyme.

She hears, but can not be heard.

On the inside she yells for help, but no one ever hears her.

She is full of responses, but is saving them for the right time to respond.

She is looking for a voice, but can not find the right one to use.

She is a fighter, but can not give a command.

This is a life without being heard.

Some days are REALLY hard

Last Thursday (September 13th) I put Oaklynn down for her nap. She fell asleep on her back and slept for about an hour (which is about 30 minutes longer than usual). I all of the sudden heard her SCREAMING her painful scream. I ran into her room and she was still on her back and her body was shaking. I knew this was not a seizure because she was looking right at me. Her arms were out in front of her and she was shaking as if she couldn't control her body. What was so alarming were her eyes. They were staring right at me as wide as I've ever seen them. Oaklynn has a way of speaking with her eyes, and her eyes were clearly screaming fear. I could see by looking at her eyes that she was SCARED. I got really scared and quickly picked her up. She continued to scream and shake. I couldn't calm her down and I noticed that she was sweaty. I held her and started crying because I had no idea what was happening to my little girl. I held her close and stroked her head and told her I was right here and sang to her. She started calming down but was still shaking. She looked up at me and her eyes were still wide and I now not only saw fear, but also saw a worry/confusing look. I tried to quickly wipe my tears as I didn't want her to see me crying. I put a smile on my face and told her I was right there and I wasn't going anywhere until she calmed down. Once she was calm, I put Mickey Mouse Clubhouse (her FAVORITE show) on and walked out of her room. I sat on the couch and started to cry. I couldn't get that look of the fear in her eyes out of my head.

I got right on Facebook and posted a message to my Rett Syndrome family group page describing what I just went through and asking them what it was. Right away I got many responses telling me that she was having "Night Terrors". Apparently these are very common in girls with Rett Syndrome.

Wikipedia defines A Night Terror as:

"A night terror, also known as a sleep terror, is a parasomnia disorder, causing feelings of terror or dread, and typically occurring in the first few hours of sleep during stage 3 or 4 of non-rapid eye movement. However, they can also occur during daytime naps. Night terrors should not be confused with nightmares, which are bad dreams that cause feelings of horror or fear. While nightmares are relatively common during childhood, night terrors occur less frequently. Children who have night terrors are usually described as 'bolting upright' with their eyes wide open and a look of fear and panic on their face, and they will often scream. Further, they will usually sweat, exhibit rapid respiration, and have a rapid heart rate. Some individuals are likely to have even more elaborate motor activity, such as thrashing of limbs. Although it seems like children are awake during a night terror, they will appear confused, be inconsolable and/or unresponsive toward attempts to communicate with them, and may not recognize others familiar to them. An estimated 1-6 % of children experience night terrors."

I then agreed that a night terror was exactly what Oaklynn experienced! I have read in different places that you should just leave them alone when this happens because just like a sleepwalker, you shouldn't try to wake them when it happens.

Today (September 17th) I was sitting on the couch around 3pm breastfeeding my baby and all of the sudden I heard Oaklynn scream. It was the same scream I heard the other day and I immediately knew she was experiencing a night terror. I quickly put the baby on her bedroom floor, grabbed my phone and ran into Oaklynn's room. I video taped a little bit of it for others to see what I experienced the first time around. The second time around wasn't as bad as the first. Her eyes aren't as wide as the first and it didn't last as long, but it is clearly a night terror...

I just held her hand and rubber her arms to console and comfort her but didn't try to wake her up. This one only lasted a few minutes and she wasn't as confused afterwards.

So this is just something else to add to the list of things that girls with Rett Syndrome have to go through. The rest of the day was horrible. She was in a bad mood and she would calm her down for a few minutes and then she would just start screaming again. Needless to say, when daddy got home I turned her over to him and broke down in tears. It's so hard when she just screams. I don't know how to console her. If she could indicate that her finger hurt or her head or that she was gassy, I could try to console her by icing her finger or helping her push the gas out. But when your child cant talk or indicate what is wrong . . . well . . . some days are just REALLY hard.

* * * I HATE NIGHT TERRORS * * *

VOTE

PLEASE take the time to click this link and vote for Rett Syndrome Research to get the money to help us find a cure... WE ARE SO CLOSE (it's been reversed in mice). Help give these girls another chance to live the life they deserve! Not asking for money... just a click of your mouse.

I like animals but it does make me sad to see so many people voting for animal rescue when little girls like Oaklynn are out there hoping to get a second chance at life. 

Please help us win!!

Necklaces

Head on over to Very Jane and check out the 6 necklaces for sale. A friend over at Mindy Mae's Market listed these necklaces to benefit Oaklynn. ALL of her proceeds are going towards helping us get Oaklynn to a Rett Syndrome clinic in California. She named the collection "Our Silent Angel's Collection" in honor of Oaklynn. She also named each necklace inspired my Oaklynn... Brave, Courage, Inspire, Love, Strength, and Hope. Very Jane has also decided to give ALL their portion to Oaklynn so we will be walking away with a lot more than expected.Please consider purchasing one and spread the word!

(Also, please head on over to Mindy Mae's Market and Very Jane's Facebook page and "like" it. They sell some pretty awesome stuff)

Oaklynn's Life Video

I made a video about Oaklynn's life and how Rett Syndrome has affected it (and all other girls out there). Please take the time to watch... Thank you!

Please also share this video with everyone you know.

Desk

Since Oaklynn got her happy chair, I have her sit in it all the time and she is more confident being in it, knowing that she can't fall backwards. She now does more with her hands without the fear of falling back. I asked my dad to make her a little desk to go over the top with a lip around it so that she could play with toys and not loose them. Usually when she plays with toys, she'll push them in front of her and then can't reach them and just sits there until I go in a put them in front of her again. So he made a little desk for her out of wood so she can have the toys and her level and not loose them. He even put her name on it for her.

This picture is her sitting in her happy chair with the desk my dad made over it.

* * * She loves it * * *

SPIO

Oaklynn got her SPIO (Stabalizing Pressure Input Orthosis) the other day. They are compression garments. Girls with Rett syndrome don't have their nerves firing off signals like the rest of us do. Because of that, they have a hard time understanding where their body is in space. I always try to give Oaklynn deep pressure (squeezing arms, legs, hands, head, BIG tight hugs...) to give her input.Our PT referred us to a new Orthotist to get Oaklynn some new AFO's (Ankle Foot Orthosis). We went and saw Barbara Boutin and she is AMAZING! If you are looking for an Orthotist, I would suggest seeing her (tell her you were referred by Oaklynn's mom, she loves Oaklynn). Not only did she cast Oaklynn for her AFO's, but she gave us suggestions of other ways to help her out. No joke... she truly was amazing. And she cared about Oaklynn. She talked to her and was very sweet with her. It wasn't a quick in and out office. She was calm and relaxed and made us feel like we were the only patients the whole day (which I know isn't true, since I had to wait a couple weeks for her next available appointment). AND we didn't have to wait an hour in the waiting room before we got to see her!

So she recommended Oaklynn get the "happy chair" to help her sit up straight and help with core strength (which we already have and love). She also recommended SPIO to us. I had never heard of it before and it isn't covered by most insurances. I looked at their website and noticed it was pretty expensive but knew it may help Oaklynn out a lot. I saw they had a 90 day satisfaction guarantee so we decided to go ahead and get it for her (not to mention right as we were trying to decide if we should get them, a few people had mailed us money for Oaklynn and we got just enough to almost cover all 3 pieces we needed). So we decided to order the long sleeve shirt, the long pants and the gloves (well, technically we only bought one glove. I thought the purchase was for a pair but when we received just one in the mail, we realized that it was for just one glove, lol. So we still need to order the second one).

She has been wearing them every day and seems to enjoy it so far. She seems to be more calm with them on (like she was with the braces on her arms). She had Physical Therapy yesterday and was wearing all 3 pieces during the appointment. We always sit her "Indian style" and she always kicks her legs right out of that position. Yesterday, she sat "Indian style" for at least a full minute before her leg came out. Also, while walking in her walker, she was calmer than usual. Instead of her heavy breathing and constantly moving her arms, she was actually holding onto the stabilizing bar and would stop walking and look around the room and smile. It was as if she was experiencing our new house for the first time. She was looking at decorations on the wall and smiling and just staring and she NEVER does that. I am amazed at how quickly it is helping her.

This picture is of her wearing her SPIO and sitting in her happy chair.

Patience

I am making a video about Oaklynn to tell her story and I decided to pull out the video camera and take video of her to show everyone how she is/the way she acts. Here is a piece of the video I took...

Not only did she say hi, but if you notice her right hand... SHE WAVES!! If you didn't notice it, you MUST watch it again.

Goes to show that she can do things but you have to be patient in waiting for a response from her. It takes her 20 seconds just to do something so easy (for a typical child) like waving and saying hi. Maybe we all need to be a little more patient in life to recognize our full potential! Amazing things can happen if we give it time.

I didn't notice the wave when I shot the video because I was watching her face. When I watched the video and saw her trying to wave too, I busted out in tears. Makes me realize I probably miss a lot that she is trying to do because I'm not fully paying attention. LOVE how hard she tries... so proud of her!

Be Grateful

Remember my post about Rett Syndrome and "The View"? If not you can read it HERE. 

Well sweet Anna from the segment (you can view the segment HERE) passed away this morning. She was only 4 years old and it was due to complications with Rett syndrome. As I shed tears for Anna and her family, I thought about my sweet angel.

It is scary to know that Oaklynn's life expectancy is shorter. It scares me that it is common for these angels to pass away in their sleep. If Oaklynn has been asleep longer than usual, we don't get excited that our child is taking a longer nap than usual. We rush into her room to make sure she is still breathing and continue to go into her room to check on her until she wakes up from her nap. We all need to remember that life is short. Cherish those you love and make sure they know how you feel about them. Life is unpredictable. I know my daughter will not live the life that I live and I will make it the best I can for her, but it won't be long. What we don't realize is that anything could happen to anyone of us throughout the day. Make sure and live your life so that others know how you feel.

I hear lots of people complain and wish they had more in life. It hurts my heart to hear people wanting more and not being grateful for what they have been given. 

You may wish that your husband brought you roses every day and did more around the house to help out. He is an amazing husband and you love him and he loves you, but yet you find something to complain about. Instead, be grateful that you have a husband! While you are complaining and wishing he did more, others who have never been married or lost their husband look at you and say, I wish I had what she has.

You may have a couple WONDERFUL kids and can no longer have any more. You constantly complain about the fact that you can't have any more children and are very sad about this (as it is sad). Instead, be grateful that the Lord blessed you with the children you have already! There are others out there who can't even have 1 child or have had a child and lost it. Think about how your complaints affect them.

I have a daughter who has been robbed of life by Rett syndrome. I can look at others and be jealous that they have children who can run around and play. Who can talk to them and tell them what they want/need. I could be jealous that they can leave their kids with any sitter and go run errands. Or that they don't have to worry about what surgery will come next. Or they can just pick up and go out with a friend without having to worry about the constant daily therapies and doctors apointments.

Instead of focusing on what I don't have, I pay attention to what I do have. I am VERY grateful for my beautiful Oaklynn. Life is hard being her mom but I wouldn't change it for the world. I get to experience daily a smile that lights up a room. A child who can speak with her eyes and melt your heart with just one look. One who gets so excited and proud of herself for being able to do the little things in life, like grabbing a ball and throwing it. I get to be a mom to a little girl who inspires people on a daily basis.  I am in NO way perfect, but Oaklynn has taught me to celebrate what I do have in life and not to mourn what I don't have. 

Oaklynn (above) 

Kynslee, her 5 month old sister (below)

Please be grateful for what you have in life and make sure that those you are grateful for, know it!

Baby

Oaklynn kept saying "baby" the other day. Austin, Oaklynn, and I were sitting on the couch. Oaklynn was on my lap facing me and I was talking to her and she just kept saying "baby". Of course it wasn't as clear as a 2 year old would speak but we could tell it was baby. So we kept saying that baby sister was in bed and just kept talking to her and playing. She continued to say "baby" and so I said to Austin, "I wonder if she wants her baby doll." Austin reach down and picked her up her baby doll off the ground.

I put it in front of her and said, "Oaklynn, do you want your baby"? She saw her baby and immediately raised her eyebrows, smiled, started rocking, threw her arms out and started shaking. We laughed because we could tell that she was excited.

I guess we now need to realized that maybe she is saying things because she is trying to tell us something, not just because!

I have been so proud of her recently. She have been doing SO good with therapy. I see how hard it is for her to try to grab something she wants so I know how hard it is for her when she actually does. She is working so hard and I know she will be walking one day. Maybe not till she is 8, but it will happen. She is so determined and wants to so bad! Love my sweet angel.