Our First LPA Chrstmas Party

Last weekend we attended our first LPA Christmas Party.  We had so much fun.  It was a BBQ Potluck Lunch with all the side dishes and wonderful desserts.  All the kiddo's were able to play and us adults where able to visit.  It was wonderful, we got to meet families that we had not meet before.  It is so nice to have other families to talk to about things that are going with the Jalinn.  We have a wonderful LPA family!!!

Santa and Mrs Clause showed up to visit with the kiddo's.  Hunter was so excited to see Santa Clause that he followed him around the room.  It was so cute!!  He told Santa that he wants a BIG dump truck.  I really think he wants a real dump truck. Jalinn even sat on Santa's lap for the first time.  She didn't even cry.  I was a little worried because she has been going through the stranger anxiety stuff lately.  She just keep looking at him like "who is this holding me". I think she wanted to pull his beard off.  Taylor and Kaylie would not sit on Santa's lap this year...I guess they are to big. 

At the end of the party we were able to get all the kiddo's together for a group picture. 

I can't wait for more of our LPA events in the future.

Thanksgiving 2010

As always for Thanksgiving we visit all the family.  I will have to admit as I get older, I think that Thanksgiving is my favorite holiday.  I just love being around the whole family. 

This year as always for the past 5 years I had to make 10 lbs of mashed potatoes and it is not the instant kind.  Yes, I peeled 10 lbs of potatoes.  I will be okay not to see another potatoes for a while. Once I got the potatoes finished we left and headed over to Grandma Rough's house to see my dad's side of the family.  With Jalinn and Grandma just have their surgery's it was a little more special this year.  We had so much to be thankful. 

Once we finished up eating and stuffing our self's we took pictures of the kiddo's. Taylor and I shared the wishbone and I broke the biggest piece...so we will have to see if my wish comes true.

Then it was off to Grandma Lamar's house (mom's side of the family). This is the crazy house.  There are more of us so it gets really loud but we all love each other.  It is so great to be around all my cousins and Aunt and Uncle's.  With the craziness I did forget to get the camera out.  

Check out pic's on my Facebook page as my computer will not allow me to upload any :(

I hope you all had a great Thanksgiving like we did!!!!  

Decompression Surgery Day October 27, 2010

We made it to Madison, WI on Monday. It was a long drive but the kids did great. I will have to say after driving through Iowa, I was done with looking at corn and then was we made it to Madison, I was done looking at dairy cows. 

Tuesday was a long day, we meet with Dr Pauli and all I can say is WOW. He is amazing and so is Peggy his assistant!!! The knowledge that he has for our kiddo's is wonderful. I am so happy that I found him and other POLP's recommended him. We then meet with Dr Bragg, the neurosurgeon that will be doing the operation. She is wonderful as well. I feel so comfortable with all of them. They make you feel like you are family. 

Mom and Dad flew in on Tuesday night to help out with the kids during the week.  If it was not for them I don't know what we would have done. 

We were told to be at the hospital at 11am for surgery to start at 12:30pm.  We arrived on time and things got started.  We were told that the surgery should take 2 to 3 hours but they needed to go slow to make sure everything was done correctly.  It was a good thing that they did the xray and CT scan on Tuesday with those scans it showed that compression was much tighter and we needed to do the surgery ASAP. With the compression showing tighter they wanted to watch her brain function during the surgery so they need to put probes into to her brain.  This freaked me out a bit but I knew they were doing what was best for Jalinn.

I walked Jalinn back to the OR around 1pm with the team of doctors and nurses.  Jalinn was in my arms when they gave her the gas to go to sleep.  The hardest thing to do was to lay her down on the OR table and walk out.  I lost it!!!  I cried so hard I just wanted my baby back in my arms again. 

Around 3:30pm they told us that they had not even started the surgery yet because they had trouble getting the second line in.  My heart was hurting so much!! 

Finally at 4:30pm they told us that they had started the surgery and they would keep us dated.  At this point I was breathing a little better since I knew the surgery had started.

At 8pm Dr. Bragg walked into the PICU waiting room with a BIG smile on her face and said "We are done and she is doing GREAT".  It was such a relief.  Dr Bragg explained to us why it took 8 hours for the surgery to be completed.  She said that they did have problems getting the second line in due the Jalinn's chucky limbs and her veins are hard to find.  For them to do the surgery Jalinn has to be on her stomach (prone position) and when they flipped her from her back to stomach they lost her and they was no brain activity so they had to flip and back and get her back.  Once they got her back and waiting a while to watch her brain function, once it showed it was working fine they flipped her back and they were able to start.  Dr Bragg said that the hole for the spinal cord was much smaller and it was every tight and it was good thing they did the surgery. 

We finally got to see Jalinn around 8:15 or so, it was the BEST thing to see her again.  She was a little puffy from all the medicine but was beautiful anyways.  I just kept giving her kisses.  

The next day Jalinn did great, we kept up the pain medication and it seemed to work really well for her.  Not even with 24 hours from the surgery Jalinn was holding her bottle for the first time ever.  Jalinn generally rolled to one side of her body but she was rolling to both sides of her body and was doing great.  

With in two days of surgery you would never know that she just had surgery she was back to herself again.  This surgery is a miracle!!!!  It saved my baby girl. 

I can't thank Dr Pauli, Dr Bragg and the rest of the hospital staff enough for doing what you did for my baby girl.  I also a BIG thank you to my POLP's for telling me in the beginning to do what needs to be done for Jalinn and for little to yourself and not the doctor's all the time.   

MRI and the Results

We had Jalinn's 2nd MRI done about a month ago and it went well.  We had to wait for a couple of days before we got the results from the neurosurgeon.  I went to the neurosurgeon appointment by myself with thinking that there was nothing that needed to be done.  Well I was wrong!!!  We found out that Jalinn needed the decompression surgery done with 3 months.  I wanted to get a second opinion to be on the safe side of things and the doctor at Children's Mercy was upset that I wanted to get that done but I thought screw him I'm doing it anyways. 

I got in touch with Dr Pauli's office in Madison Wisconsin and told them what was going on and they requested the scan from both of Jalinn's MRI's.  It took about a week to heard back and they said that say she needs the surgery and it needs to happen now.  So off to Madison, Wisconsin we go.

School has started....let the crazy begin

I can't believe summer is over already and school is back in session. The girls were so excited to get to school to see their friends but their teachers too. I will have to say that we do have some of the best teacher in our school district.

As Taylor starts 5th grade this year at a new school, I was a little nervous. It is new for the both of us. She is now is middle school...I don't think I am ready to have a middle school kidoo yet. It just seems like yesterday that she was born. It makes me so sad...she is growing up so fast. Where has the time gone? This was the first year that I didn't get to go with her on the first day of school. Since I was unable to do that we went to back to school night and meet her 3 teachers and yes, I did get a picture of her homeroom teacher with her. I have to have it for the scrapbook!! 

 

Kaylie's back to school night was great as well.  I had to work most the event for our PTA.  It was a great turn out for our school.  Kaylie had fun running around the school seeing her old teacher Mrs K....we miss her so much.  Kaylie had Mrs K for two years so this is our first year with her.  She was a great teacher and Kaylie loved her. 

 

Now we are in the full swing of school and Taylor has had her audition's for the Timber Singer...we find out today if you made it.  She is also doing volleyball this year.  Kaylie signed up for cup stacking.  It is busy times but I would not have it any other way. 

 

Hunter and Jalinn are doing great too.  Jalinn is doing great at PT and yesterday she said DADA for the first time.  Time is going by too fast!!!

Jalinn's First ENT Visit July 2010

We finally got into the ENT Clinic at Children's Mercy. Jalinn's pediatrician wanted her to see the ENT so that could just check things out. Per all the research that has been done for achon there is a chance that Jalinn might need tubes in the future.

The ENT was great. Jalinn did have a little fluid in the left ear but it was not red so there was no need to worry. Jalinn does have a slight cold right now and that could be why the fluid is there. They did a hearing test and Jalinn had a partial fail because of the fluid.

Overall the appointment went great.

Jalinn is now 15lbs too. She is all rolls.

I love that girl so much!!!

Jalinn's First Phyiscal Therpy Appointment

When I took Jalinn in for her 6 month check up her pediatrician thought it would be good that we start to see the PT. With Missouri First Steps Program Jalinn doesn't qualify so we are going through our insurance and see the PT at Children's Mercy Hospital. She had her first appt about 3 weeks ago and her PT is so happy with what Jalinn is doing. She is rolling over and has great head control. At the first appointment we went over Jalinn's medical condition like all of the doctors that we see. I am so happy that I keep track of everything and bring Jalinn's book with me to every appt. It helps out so much. Her PT just really just play with her and she focused on the legs. Right now Jalinn is not wanting to up in pressure on her legs for standing. So she gave us exercises to do and home and they are helping. Her PT wants to see her twice a month until October.

At our last visit with the PT she told me that she did a "standard" test on Jalinn and right now is a ranking at at 4 month old. Jalinn is now 7 months. She told me now to worry about this because achon do fall about 6 months behind "normal" kids. Has a mother I worry about I know in Jalinn's time she will do everything she is suppose to do and then we will not be able to stop her.

Jalinn is developing her own personality now. She is just a joy to be around.

The Big Birthday Bash June 2010

With 3 of my kiddo's birthday in May, June and July we decided to have all of there birthday's at one time to make it easier on us and our family. We I told the girls that we were having the party at our house and they could invite their friends, Taylor had a list of 25 friends yes 25...my thought was what was she thinking. I finally got her to narrow it down to 10. With all the invites sent out the planning started. We decidee to have a BBQ and instead of cake we did ice cream sundaes. We also had a bouncy house (thanks to Kaylie's friends for letting us borrow it), jump ropes, hula hoops and the sprinkler.

The day of the party we got all set up and we were told by the news that there was chance of rain but who believes the news...well we should have. The party was to start at 1pm and at noon it started to rain. I don't mean a nice rain shower it was a down pour. The wind was horrible and it was raining so hard that we couldn't see the house across the street. But kids were still being dropped off. Thanks to all the parents that braved the weather. So with the rain we could have the party outside. I had 25 kids in my house and my house is not set up to have 25 kids plus my whole family. It was packed. Once the rain let up about an hour later the kids all went out side and played and had a blast. The party was a success and no one got hurt.

Thanks to everyone that came!!!

Pictures are on facebook...hope you can take a look at them.

A wonderful poem

I ran across this poem from one of my POLP's mom (Tonya) on her blog and facebook and thought I would share it. It fits so close to home now.


How God choses a disabled child for a mother-Erma BombeckShare Published in the Today Newspaper Sept. 4th, 1993

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger. "Armstrong, Beth; son; patron saint, Matthew. "Forrest, Marjorie; daughter; patron saint, Cecelia. "Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity. " Finally, he passes a name to an angel and smiles, "Give her a handicapped child." The angel is curious. "Why this one, God? She's so happy." "Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel." "But has she patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it." "I watched her today. She has that feeling of self and independence. She'll have to teach the child to live in her world and that's not going to be easy." "But, Lord, I don't think she even believes in you." God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says "Momma" for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations." "I will permit her to see clearly the things I see---ignorance, cruelty, prejudice--- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side." "And what about her patron saint?" asks the angel, his pen poised in midair. God smiles. "A mirror will suffice."

Trying to catch up

Since my last post it is has crazy with the end of school happening. For Taylor we have her 4th grade field trip to Jefferson City and we had a blast. It was a long bus ride with about 45 kids but we all made it. Then it was time for the 4th grade farewell party. In our school district elementary ends at 4th grade. We had t-shirts made up for the kids to keep. During the party we had tons of food and they all just got to hang out with NO RULES. The loved it. It was sad...I have known most of these kids since they were in kindergarten and they are all grown up. Taylor is now off to 5th grade at Fire Praire. I know she will do great.

We also had a end of the year party for Kaylie's class. The class has been together for kindergarten and 1st grade. She has one of the best teachers out there. Not only did Mrs K teach my daughter so much she is part of our family. I truly love her...she will always be a part of us. The party was really fun. Mrs. K read aloud a poem she did, it explained something about each of her students. Kaylie's read "Can read about any book". I am so proud of Kaylie is reading on a 4th grade level and is only in 2nd grade. It pays off to have an AWESOME teacher!!!

Jalinn and Hunter are doing great. Jalinn has finally figure out how to roll over. Of course, I was not home to see it. But she did do it again for me when I got home. She is growing up. Hunter is finally potty trained!!!!! No more diapers for him. He is doing so good. Jason told him that he is starts to go potty on the potty chair he can go hunting. Hunter is ready to go hunting now.

Now it is time to get ready for the big birthday bash on June 10th. With Taylor, Kaylie and Hunter's birthday being all in May, June and July we are having one big party. Can't wait for the party.

Ortho Visit

Well we had Jalinn's first ortho visit today. It went rather well. They took xray of her legs and said they look great. We just have to watch her lower back. A portion of her spine is sticking out so we go back in October for xray on the spine and a visit with the doctor. It was an early appt but well worth it.

I hope everyone had a great Mother's Day over the week. I did...the kids all made me cards and Jason took Hunter fishing for a few hours so I could just have some time to myself. We then went to Mom and Dad's for a bbq with the rest of the family. I love my crazy family.

Can't believe my babies are growing up

Jalinn is already 4 months old...where does the time go? She is starting to stay up more and more and is starting to reach for things and hold them. She has not rolled over yet but I know the time will come. She is my joy along with my other kiddo's. I love them all very much. Sometimes they drive me crazy but I would not change a thing about any of them. It just melts my heart when Hunter looks up at me and says "hold me". I love the fact that he still wants his mama. Well he is a mama's boy.

Last Friday...Taylor's boyfriend stopped by the house to see her. You have to keep in mind that they are only 9 so alot of it is innocent stuff. He was so cute. You could tell that he was nervous. She was in shock that he came by. They hung out for a while and then we took him home. I think they had a great time. I am not ready for all the boyfriend drama already. She is growing up. My baby is going to be 10 this month...she going to be in the double digits. No fear!!!!!!!

The whirl wind of learning about dwarfism

The next day at the hospital our nurses brought us in information that they found on the Internet about dwarfism. It helped so much to read all I could. Have we got home from the hospital I hit the ground running. I wanted to know everything I could to help Jalinn through out her life. I got in touch with our local LPA, Jack and Lecia. They are the best. Lecia is so easy to talk with and she is a big help. I also joined grouped on facebook and told our story. That helped as well. There are so many families out there and they all are the best for helping me understand what Jalinn will need. There is a list of doctor's that we needed to see so I just started going down the list. We have seen the genetic doctor to confirm the blood test, we have seen the sleep clinic and they are going to schedule a sleep study just to get a base line on Jalinn. On April 30th we did the MRI and I was so scared. After reading online about the need to be extra careful when putting a little person to sleep for and MRI can be tricky, I was a nervous wreck. We got the results back and had to see a neuro surgeon, right now they are watching the foreman magum..a portion of Jalinn's spinal cord is narrow. We go back for a another MRI in October to see how things go. I try not to worry about it but I do. I am just so scared for my baby. Sometimes I just want to scream out Why Jalinn. I know things could be worst but I have never had to deal with anything like this and it is scary.

I only advise that I can give to an new LP parent is to keep track of everything and read and ask questions as much as you can. I have a binder that has all of Jalinn's medical notes from just her ped's check up to see all the doctor's at Children's Mercy. It has helped me out.

The day my world changed

The reason I started this blog is to help me express my concerns and love for my little Jalinn and the rest of our kiddo's. To start this out. We have 4 kiddo's: Taylor is 9, Kaylie is 6, Hunter is 2 and Jalinn is now 4 months. Jalinn was born with a form of dwarfism called achondroplasia. Let me back up some. Jalinn as a surprise when we found out that I was pregnant. It was a complete shock but happy at the same time. I love my kiddo's and would have not changed it for the world. I have a very normal pregnancy with no problems. My due date was on January 6th but with the holiday and all my doctor decided to change the date to December 31st. I was having a c-section. On December 22nd, I went to the doctor for a scheduled sonogram and they noticed that a portion of the sack was tearing away so I was admitted to the hospital to be watched and monitored. That night my doctor told us that they are going to perform the c-section the next day which I was a little upset because I know we were not going to be home for Christmas with our other kids, I knew the doctor was doing what needed to be done. Jalinn was born on December 23rd the same day as your older cousin Catilyn. After her birth Jason went right over to her and said "her forward likes big" I didn't think any of it since our oldest Taylor head as odd shape as birth too. They need got her all wrapped up and I got to see her and Jason was holding. They noticed that Jalinn was starting to breathe a little funny so the took her into the nursery to evaluate her. That is when they noticed that she did have a rather large head and had the shorten limbs. They were fearful that she had hydrocephalus "water on the brain" so they called the neuro surgeon from Children's Mercy over. I was unable to see her for about 4 hours. They didn't want to move her until the neuro surgeon got there. All that we were aware of at this point was the hydrocephalus. I was so scared...none of my other kids had any problems at birth and I was able to hold them right away. About 4 hours later walks into my room the neuro surgeon, my nurse and the head nursery nurse. I know at that point something was wrong. The neuro surgeon started to talk and she said that there was NO hydrocephalus but Jalinn does have achondroplasia an form of dwarfism. She said it was the most common form. She continued to talk and honestly I really don't remember what all she said. It was all such a blur. She kind of stopped talking and I looked at her and said "so you are telling me that my baby has a form of dwarfism". Once those words left my mouth I lost it. Every emotion that you can think of came out. It was so hard to hear that my baby was going to be "different". Jason then ask what is the life span (at this point we know nothing about dwarfism except what you see on TV). The doctor said she will live a normal life, she will just be shorten than the rest of us. At this point both of my parents and the kids were in the room. My mom left to go get my sister (she was down the hall visiting her friend that just had a baby the day before). I could not look at anyone. The doctor has to confirm we will need to do blood work and she x-ray of her bones. She said we could the x-ray that day or wait until we got down to Children's Mercy. I looked right at her and said "let's do it now. I have myself and whole lot of family to prepare for this". I then ask everyone to leave so that Jason and I could have a moment to take it all in. I cried so hard and it was the first time in a long time Jason cried. It was more of shock. Thoughts were going through my mind like "Why my baby?", "Why us?" "Will she drive, go to prom and have friends. I know the people are mean and I didn't want my baby to have anything to worry about in life. I just cried and held on to me sweet little girl for the rest of day.