Forgot my sign in info!!!!

Well things around here have been ok. kaelyns mri for tsc came back normal but notwe are going to have a slew of other appointments to figure out what is going on. She is going to be 2 very soon this is very exciting. she is starting to eat now!!!!! very excited about that :) Dakota is 4 months old and she adores him. I finally started working. I really needed to have that furfillment in my life. Well i will write more later now that i can remember my log in info lol

SWALLOW STUDY

BRAG ALERT:

So kaelyn passed!! She can have nectar thick liquids now. and pureed foods this is so exciting!!! Now i know that her not eating is not permanent!! She is also standing up on her own for 5 seconds and she sits back down because she is to scared. So i for see many exciting things to come. As far as her brother goes i don't think she quite gets what he is yet. Soon though.

MRI dakotas birth life in general

Our MRI had to be rescheduled because kaelyn was on her food for an hour to long. Because she has to ave anesthesia. but, her swallow study is this Thursday and we are excited. Her brother was born on Tuesday and he is happy and healthy. Kaelyn still doesn know what to make of him lol. She will soon enough =) I am just recovering rom the surgery and doing what i can i am so in love with my family and i hope all 4 kids will be home soon. well i hope you are all doing well. LOVE, The brothers family

Kaelyn update pictures the easter bunny mri tomorrow

Tomorrow morning is kaelyns MRI i am very nervous. My c section isnt until next tuesday so i can not be there with her. Daddy will be there but until they get home i will be a wreck. I am used to being by her side for everything she has to go through and they have to sedate her. I will keep you posted on how it goes. We got pictures done this week with the easter bunny and in the picture studio i cant wait to get them back so i can post them!! Well i cant really write much i have way too many worries running through my mind about tomorrow. Hope you all have a blessed day/night. Keep us in your prayers. I hope they dont find anything wrong so this can be put behind us with out surgery.

I know i havent posted lately.

Sorry i haven't been posting lately. There is a lot going on here. My grandma fell very ill which landed us taking a trip to Spokane to see her for possibly the last time and she of course pulled through. She is to stubborn to go :) But it was awesome kaelyn got to meet her family. Her favorite person is my dad she even said grandpa for the first time.... She says it go-ga Its too cute!! She also got to meet great go-ga stone. She has also said grandma and that is goo-ma. I am sooo happy that she is talking even if it is kaelyn language. On the 16th daddy has to take kaelyn to children's for her MRI she will be sedated so please keep her in your prayers . They are checking for a tethered spinal cord. She walks on her toes and she has the butt dimple with a thick tuft of hair. On the 30th she is going with daddy again for a swallow study. We hope all goes well with that too. Her physical therapist will be there to observe and talk with the specialists so we can know where to go with her therapy from here. She also saw a dentist for the first time who i was told specializes in kids with disability's. I never thought that she would be an rts expert. She studied rts for 2 years and even met doctor Rubinstein and taybi. For that i feel we are so blessed. Our baby boy is due via c section on the 21st of this month but with me nesting i dont know if i will last that long. We are busy this month with sooo much but we will do our best to post updates and pictures!!


-The brothers family

Many new things!!

So we attended two really good friends weddings this past week sean and lilly got married Kaelyn had a blast at the wedding until grandma came and got her and that was the first night she stayed away from me. It was really hard for me even though miss kaelyn did not seem to care. We also moved. I just got internet access back today. We had to wait for them to come hook it up. Our new house is only 3 dollars more a month then what we were paying for a 3 bdrm town home with a 1 car garage. So now we have a 2 car garage 4 bdrms 2 bathrooms a large back yard and the coolest land lord ever!!Kaelyn seems to be doing very well it took her a couple of days to adjust. She had a day or two of clinging on to me and bing confused about the new house. Now she just wants to explore. She is also walking side to side on things and imatating sounds like ooos and awhs . da da ma ma. Her physical therapest says it wont be long before she is walking. She is not cleared to eat yet (We have to get another swallow study) But, She stole a french fri from me and i had to dig it out of her mouth :( On a plus note i had to dig it out because she chewed it up!!!! She is learning so much. Well i will up date you more soon with pictures of our house. But for now i have pictures of kaelyn at the wedding :)

Kaelyns day of grocerys and laundry :D

So today kaelyn and i went to get grocerys with grandma and she again is helping me with the laundry. I am so happy to be this little angels mom. She is my world. Besides my other kids. They are all my world but. I wouldnt for anything trade her for a baby with out rts. she is still on pedialite and there has been no vomiting today. I got a refill of zantac at the pharmacy and i am happy to put her back on it. Cant hurt anything. Well i am tired but , I just thought i would drop a line and some photos from today :) Hope you are all having a good week.

7 hour day at childrens hospital.

So we ended up calling her doctors office to make an appointment for kaelyn because she at this point is on day number 3 of not holding food down. Her doctor isnt in but they can make an appointment with someone she has never seen. We make the appointment and cancel and end up at the emergancy room at childrens at 11 am. Kaelyn cant hold anything down we wait in the waiting room for 2+ hours . . . .We finally get back and sit there for 5 hours just to hear they dont know. They did check her urine it was fine her vitals are fine and she can hold down 120 ml of pedialite Now i am sure most of you know when it comes to children who silently aspirate such a thin liquid is scary if they are sick. Especially if they do not have a answer as to why she has no fever or coughing/ gaging and is just vomiting. Since we have been home she has vomited all over her bedding. I guess i just have to contact her doctor tomorrow. But if she has any issues we are going back in to the hospital to be admitted. If she aspirates and cant clear it there they can suction it out. Here we can with the bulb sucky thingy but its not as effective. I hope my baby gets well soon.

Day out with grandma

So we went out with grandma on 02-08-09 (Sunday) We went to a resturant and ate some really good corned beef and cabbage. Our waitress has a daughter named sara who is 19 months old with disabilitys like kaelyn and they sound like they are almost the same age devolpmentally so we are going to get the girls together for a playdate. This should be fun!! Before we left the resturant kaelyn vomited. She vomited all over the place the night before and now i am thinking she is sick. With kaelyn its hard to tell when she is sick she seems fine. so it would be hard to know. The picture in her car seat is after we got home you can see in her face that she is not feeling well. But , The pictures before that are before we left she looks perfectly fine. My poor princess.

Busy days and sleepy nights

The last couple of days have been really busy for us. We saw kaelyns doctor on monday kaelyn now weighs 21 lbs even!! We should throw a party for her!! I went to the doctors because i was worried and again there was nothing to worry about, What i thought looked like swelling in her hands is only chubbs from her gaining weight. The smell coming from her mouth is a sore throat nothing serious so far. Being tired well she is growing so her doctor was as happy as we could all possibly be its exciting!! kaelyn, has had the same doctor since she was born and we absolutly adore her. I reccomend her to everyone who has a child with special needs. She does her best to learn what she can and since kaelyn had a lot of respitory issues we played her shots by ear. For the longest time we saw holly once a week on tuesdays at 1 pm every week. She always makes time for us if we need it. Why cant all doctors be sooo awesome!! So yeah . . . .Kaelyn is doing really well I got some really cute pictures of her and daddy. Tomorrow is play group at wonderland and i am excited to see how she does. Kaelyn is starting to stand on her own too! I got her some signlanguage learning cards so we will be doing those and they have pictures on the back too. Exciting new things to come!! I hope you are all doing well!

Sleepy and getting bigger?

So just in the past few days i am noticing a huge weight gain for kaelyn and some breath issues. I wonder if i should be worried. I am of course calling her doctor but, I am just wondering have any of your kids been way under weight and just starting to gain massivly in a matter of days? Also she is very sleepy today she took her normal nap from 12-3 but she was crying for her bed at 8:25 last night instead of 9:00 and she slept the whole night through until i had to wake her at 8 am. I am probably going to take her to childrens. But just because in a room full of specialists rts is our specialty as parents of these angels i wanted to see if you guys had any insight? Maybe this has happened to your little one? I took her off her toy and she was asleep in my arms. I mean the pictures are adorable and maybe i am a worry wort lol. Anyways i will be posting this on the mailing list as well. Take care and have a good night!

Silly goose next tuesday not today!!

So today we got up and got ready for physical therapy. We wited 10 am came and went and no one came... So i called wonderland like uhmmm hi I think we may have missed you? Nope, It was next tuesday not today. Oh boy am i bad getting the week mixed up. Hopefully soon we can set it to 3 days a week at the same time every week. It just makes things easier to schedule :) I have a question for all you moms of the rts family. I am wondering due to not being able to eat have your kids suffered some sensory issues? Such as a need to ocd style lick everything in the room before playing? And if so how do you work through it? My daughter is tareing up her face and it makes me sad because i dont know what to do. It doesnt seem to hurt her its just chapped. I put baby boraxs face and lip balm on it constantly. Well we hope you all had a good day.

Church and lazy monday.

So yesterday we went to church i ended up not picking up jocelyn and michael i was running late due to the snow . . .yes snow. Kaelyn kept trying to crawl to the pastor i think she was interested in what he was doing with all the attention :) When he was preaching she started saying da da again and really loud it was so cute. I love our church because i know if kaelyn is talking no one minds. After church i went and picked up thomas jocelyn and michael. Thomas and michael hung out with carl and kaelyn and jocelyn and i went to see twilight. I could barley pay attention to the movie since i dont like leaving my baby. But it was a good movie. After the movie i took jocelyn thomas and michael home. Kaelyn continued to spend time with her dad. It was a long tiring day. Today we are doing the usaul cleaning and and relaxing i am kinda wiped out due to the antibiotics i am on and being almost 7 months pregnant. But i took a picture of kaelyn just now i would like to share. Hope your all having a blessed day and keep bella and her family in your hearts thoughts and prayers. Sleep well in gods arms princess.

Time at grandma's house!

Today was a rather eventful day. We went to grandmas house to play with michael. My brothers son. kaelyn and her cousin were so busy it was really hard to get a picture of the two of them. Michael can do many more things than kaelyn. I think part of the time this confused her she really just stared at him like what is you doin? he can stand on his own and do the side walk where she is just crawling really good. pulling her self up. He is also very talkitive which threw her off a bit she says some but was hesitant to talk around this little chatter butt :D These 2 are too cute together. I just think that kaelyn will probably understand other children as we attend more play groups. Beacuse of her being sick all the time she is used to mommy daddy and hospital staff. So physical therapy and the groups of children that meet to play twice a week should be really good for her. So on our way home it started to snow. This isnt so good for washington because well, They just are not that prepared for the snow. Last time it snowed we had like 2 feet an no one plowed so it was a disaster!! Well i have to get to bed we are picking up michael and his mommy jocelyn for church in the morning. We hadnt been able to go for awhile due to having to dispute the insurance company for denying kaelyn for her synergist shot. But she has had it for a week and a half now so i can feel comfortable taking her places. I know crazy germaphobic type, But when you have a child with respitory issues you can never be to careful for there health or safety.

Love always,

Kaelyn and tabitha

Kaelyn likes to help with laundry

Just thought i would share the cute picture and take some time to answer the comments that were left . I do not know how to answer them on your profile. I am learning so bare with me :) So for those of you who have left us comments thank you to you all and i am glad to have a support system in the rts family. To Natalie hello !! Its nice to meet you. I want to thank you all for sharing your experiences with rts with us and your blogs as well. I have added most of you to the blogs i follow list and i hope that someday we may possibly meet you and your families. This year we cant make it to the specail friends get together because i am due in april and i cant travel in march (Way to close to my due date) but, Next year we should make it. Let me know if there are any more get togethers if you know of any and i will be more than happy for us to make it if possible. Seeing your little ones journeys it seems like kaelyns devolpement is right on track and that is very comforting to us. The doctors dont really know much so we have to rely on each other. I do find blogging and writing very theraputic . Well thank you all again and have a very blessed day night week month year Ect...........

Love always,

The brothers family

Fisher-Price Go Baby Go! Bounce & Spin Zebra

So as you may or may not know kaelyn has this obsession with jumping and had a jumperoo which we just took her out of. I was really scared to let her play on this new toy that she could bouce on because she still cant walk. Although she pulls her self up on this pretty easily and, can sit her self down too. When we took out this toy and let her play on it the jumperoo was retired. This toy the next step and a god send (great christmas present mom) She has to wear shoes to reach the floor but she does just fine with it. I am so proud of my little boogs she is learning and growing so much just in the past month.Today we were supposed to start the play group but kaelyn wasnt in the best of moods. So i think on monday we will start.  I hope to have a new picture to post of her progress every day. 

Tonight we started some ideas i had for therapy

When we eat i decided to have kaelyn sit in her highchair and explore eating dinner breakfast and lunch with out the food because she cant have anything by mouth. It was fun for her and i took some pictures i want to share :D She gets her own plate and spoon which seemd to make her happy. Useally when we eat she is pulling in our plates and just curious. She for the first time was content and uninterested in our food but interested in her plate and spoon. (By the time i got the camera out she was done exploring the plate)

physical occupational and speach therapy

So we met with francesca today (She is the family resource coordinator)to further put together a therapy plan for kaelyn that envolves our concerns as a family for kaelyn. I love this place we are going through they are called wonderland.We have also met with there speech pathologist and there occupational therapist they came to our home on monday. I love the fact that the therapy takes place in the comforts of home so Kaelyn can get what she needs rather than having to get used to the environment every time we go to therapy then we can get to what we need to work on. I think that this is very important to keep the familiarity and repetitiveness to kaelyns schedule. On Mondays and Thursdays at the center for an hour and a half they have a play group. I am excited carl and i are going to take her tomorrow and hopefully every Thursday so she can interact with other children in an environment where i feel comfortable. More exciting things to come for our family!!

Kaelyns journey up to date.

I found out that i was pregnant with Kaelyn when i was about 2 months along. We were living in bethel maine at the time. I was extremely sick through out the pregnancy i had to lay still in bed for weeks on end to avoid being sick all the time. I lost massive weight during the first and second trimester due to being sick. When i was 5 months along we came back to Washington for some personal family issues. At that time i had started to feel better. I was still ill but i could handle it. I was having issues with vomiting and passing out and my blood sugar being to low. I arrived back in late April of 2007. Before i arrived in Washington i made appointments with my obgyn to deliver my baby and to find the sex of my baby and do all the norm. check up stuff. I found out shortly after mothers day may of 2007 ( The day her dad arrived) That we were having a baby girl. Her ultra sounds looked healthy she was active and her heart beat was really good. I went in for the diabetes testing and i tested with high blood sugar i was supposed to do the next test which was a 24hr fast and then for 3 hours a blood draw every hour on the hour. I couldn't go 3 hours without eating it made me very ill. So i never got the test. In June i started so swell and retain water. In July My husband had to take me in to the maternity center because i went into preterm labor which was stopped by using tribitulene. i also had an exam to make sure my water didn't break talk about pain worse than child birth. by the time September 2nd came around i was so swollen that i couldn't bend my foot at all. I started to retain all the liquid that i drank. My mom and my aunt and her family had all went to the fair that day and had to leave i sent them a picture of my foot and said i need to go to the hospital i think. Stephenie drove me to the maternity center at evergreen hospital in Kirkland Washington. Shortly after my mom and aunt arrived and they took me back to labor and delivery. I was so scared my baby wasn't due yet i was 35 weeks and 3 days but my body couldn't do it any more my kidneys and liver were failing. We were deliberating whether we were going to try and wait or if we were going to tell my husband that he needed to come to the hospital because Kaelyn was going to be born and i don't want to do the c section with out him. Despite the tension in the room i was cracking jokes trying to make the best out of a scary situation. The doctor and every one laughed and then the doctor said that yes we are going to have to deliver the baby tonight. Thats when my aunt gave my husband the go ahead. My husband arrived just in time 2 seconds after he got there they were ready to take me back. I had my aunt Lisa and my husband Carl in the operating room with me. I was shaking so bad because i was so scared. Carl taped the birth. The nicu was there so they could check Kaelyn over. She was born on September 2nd at 11:41 pm she was 18 inches long and 4 lbs 7 oz.I got to see her for a second before her dad had to carry her to the nicu. NICU=Neonatal Intensive Care Unit. I was given medication after they got her out because i couldn't stop shaking. on the plus side she seemed perfectly healthy. She came out screaming no oxygen needed. Just on the really small side and that was the worry her weight wasn't as big as she should have been for how many weeks she spent in utero. They took me back to my room where i would spend the next 3 days. I struggled to get myself out of bed so i could o see my baby. I couldn't move but they brought her to me. She was so small and she didn't look like me or carl but she resembled a little old lady. her dads thumb was as big as her torso. They came to weigh her and had to take her back the the nicu because she dropped to 3 lbs 13 oz. Its normal for baby's to loose a significant amount of weight when there born but when your that small you cant afford to loose all to much weight. I was going to be realsed on the 5th of september but i started crying because they were going to have me leave my baby. I decided i wouldnt leave i would sleep in the lobby. I couldn't leave her. It wasn't right. My husband had spent so much time upstairs with her that he talked to the lead and she got Kaelyn moved to pediatrics so that carl and i could stay with her. She couldn't go home until her o2 sats(Oxygen saturation) stayed up while drinking a bottle. it took her 2 weeks to be discharged. When we go discharged Kaelyn was still in preemie clothing (Swimming in it) and we had a swallow study scheduled for 3 days after our discharge at children's hospital. Upon receiving the swallow study we learned that Kaelyn is what you call a silent aspirator. Which means when you and i in hale liquids we cough to protect our air way Kaelyn does not. This is the scariest kind of aspiration. So this was to be our 2nd hospitalization it was for 3 days to teach use how to put a ng (nasal gastric through her nose down to her stomach) tube in and how to feed her. she was prescribed medication and a wedge to sleep in for reflux because during the swallow study you could see her stomach acid climbing up her esophagus. Every thing was going fine until 10-20-07 Kaelyn was 8 weeks old. I was on the phone with my mother in law. Kaelyn was on her feed in her wedge being cute i was turned around for a second and turned to look at her because i often worry. Her arms were straight out and she looked scared. She wasn't breathing. I was so scared that i forgot how to do cpr. My mom in law walked me through it as soon as she was breathing i called 911. We at the time we being followed by her doctor weekly every Tuesday at 3:30 pm. There had been no warnings that this could happen. we were rushed to evergreen er where we sat for 4 hours and learned that we had to have an emergency transport to children's hospital. Evergreen doesn't have the right respitory specialists thats Kaelyn needs.At children's we were admitted to the hospital her ng was changed to an nd (Nasal duatnum From the nose into the opening of the small intestine) It was determined that she not only has a descending aspiration but a ascending aspiration as well. Meaning when she swallows she aspirates when she vomits she also aspirates. We spent 11 days in the hospital we were discharged on 10-31-07 we thought this would fix everything we were wrong. on 11-08-07 through 11-10-07 we were admitted to children's again for a fever and a cough caused by the damage the aspiration caused in her lungs at the time we did not know that she was still aspirating her stomach acid making this the 3rd of many hospitalizations for fever and cold. Kaelyn was 10 weeks old. on 12-09-07 we were admitted again for the early morning for more aspiration she had a high fever difficulty breathing vomiting and dirreahea we were discharged that day. we had many visits to the emergency room with aspiration and at this time we got a refferal for a bard g tube placement. and on 7-24-08 it was placed we went home on 7-25-08 and couldn't be happier with the tube placement. On 06-10-08 we received a positive diagnoses for rts since then due to some other issues like hands and feet being a almost constant blue/ purple and bladder infections that were making her vomit. Kaelyn has had a renal ultra sound with no issues reported she has also had a heart ultra sound and there findings are that she has a small vein from the heart to the lungs still open that was supposed to close in utero and a small hole in the top of her heart. The hole may need surgery which they will do when they close the small vein at 2 years of age or so. It took a while to diagnose Kaelyn with rts because she does not have the problems with her hands and feet that most people believe to be a 100% feature of children or adults with rts. Kaelyn has failure to thrive devolpemental delays and rts. among other diagnoses that i cant recall at this time. Her rts seems to be mild but still apparent. Kaelyn is now 16 months old she weighs 18 lbs and 13 oz she can crawl but no walking she says mama and dada rarely but she can say it. she has been checked for eye and hearing issues and there are none aside from a mildly lazy eye which i also have. her father and i are so happy to have such a blessed little angel in our lives. Kaelyn has 2 older brothers who currently reside outside of the home they are both 5 yrs old Jordan lives with his dad and Joshua lives with his mom. Kaleyn has a little brother on the way he is due on april 23rd of 2009.