The Kelly girls

Well. it has officially been 6 weeks since Baby Teya's birth and we are adjusting to the world of three girls ages 4 and under and all in diapers. Here are updates on our sweet little girls: (Click on the names below the thumbnail pictures to view recent pictures of the girls)

Maya: This is Maya's last week of night nursing! AHHHHH! I am enjoying the freedom that has come with not having day nurses, however, I REALLY loved having someone care for her from 11PM until 7AM. On the bright side we will get to go to bed earlier and not have to stay up for the nurses to get here. Unfortunately, when Maya is sick she will need some care during the night to keep her oxygen on her, and her feedings going. Also, she has been doing some night waking where she wakes up as early as 1AM and stays awake the rest of the night. I am hoping that the absence of the nurse will bore her and she will go back to sleep on those nights...I guess we just have to wait and see. Maya also has a wonderful teacher that has been coming to the house and signing with her 3 mornings a week Mon, Wed, and Friday. She and Maya have a terrific bond and Maya is making some good communication progress with her. Maya also is going to speech once a week for the summer and we are hoping speech and her teacher will keep her progressing until school starts again in the fall. Maya has now had two challenging colds since her trach was removed and she did really well. The nasal canula kept falling off because of all her secretions, so we had to use "blow-by" oxygen. She was really cute, because she would fall asleep and just grab the blow by oxygen and hold it to her face...so cute! Her stoma is still open, and the doctors will look into closing it (if it does not close on its own) by November. In the meantime, Maya wears some pretty cute handkercheifs around her neck so that she does not irritate her stoma by poking it...which she likes to do. Maya LOVES the summer time and being around her sisters more. She has signed "baby" a few times for Baby Teya, and has been trying to copy Addy's attempts at somersaults...Let's just say Maya has mastered the Downward Dog yoga position (head on the ground and bottom in the air)! All in all we are pleased with Maya this summer and enjoy having more time with her during the day, however I am trying to not freak out too much about our upcoming nights with no nursing and a newborn!

Maya 7/18/08

Addy: Addy continues to amaze us with her physical and verbal abilities. She is not two yet, but has decided that there is nothing better on Earth than dancing and gymnastics. As she watched the Olympic Trials for gymnastics with me she shouted "sommiesault" over and over until a commercial and then she asked for "more sommiesault". She also watched some of So You Think You Can Dance the other day when I was watching a recording of the previous night's show. She started spinning and would not stop until the dance finished and then she quickly said "more." Tonight as I tried to keep her occupied while I nursed Teya, I turned on a children's music CD and she just danced around the living room the entire feeding, which I think lasted at least a half an hour. She is also starting to use more sentence like speaking, and asking tons of questions ussually beginning with the word "where"..."where did (fill in the blank) go? (Daddy,Shasta,Maya,Teya, Mommy) She is a ton of fun and a fireball of energy!

Addy 7/18/08

Teya: Teya hit 6 weeks old on Thursday and continues to be a terrific baby. She does cry a little more, especially in the evenings, but she definitely is a pretty easy going baby. Teya ussually will sleep a chunk at night from 10 or 11-4 , then feed and go back to sleep until 6:30 or so. We are managing to find some sleep so that really is what gets us through our busy days. Our sweet baby loves to go for rides in the baby carrier, the car, and loves to cuddle. Maya loves to play with her feet and Addy really just wants to attack her with hugs and kisses. She is growing every day and filling out the clothes that once were very baggy on her. Her hair (eventhough it seems to be falling out some) is light brown and her eyes are still blue...they could still change. We are anxiously waiting for our first smiles...they should be just around the corner!

Baby Teya

Mom and Dad:
Are tired and wish we could actually find some time to talk just the two of us...but that should come in time. For now we are grateful for every uninterupted hour of sleep and breaks to go work out or visit a friend. Mom is pretty much all recovered from her C-section and back to normal activities. In a few weeks Dad is flying to Wyoming with Addy to visit his mom and dad, and Mom, Maya, and Teya are going to Portland to spend time with her folks. Overall, the transition could not have gone smoother and we continue to be showered with meals and visitors and Marty is beginning to wonder what meals will look like when she has to find time to make them.

Baby Teya

Baby Teya 06/05

Baby Teya arrived safe and healthy after a C-section on June 5th, 3 weeks early...just like her 2 Big sisters:-) She weighed in at 5lbs and 11 ounces and 18.25 inches in length...she is barely on the charts...just like her two big sisters. While her coloring is more like Maya's, with her hat on and her eyes open her face is very similar to newborn pictures of Addy.

Addy is entranced with "Baby Teya", and while Maya has not really paid much attention to her yet, she will give Teya smiles. Now, if only Mom would recover and start playing with the girls, life would be much happier. Both Maya and Addy are yearning for Mommy cuddles and play time. Mommy, however is still sore and healing...but looks forward to playing with the two big girls again soon! Daddy on the other hand is making up for it by playing hard when he gets home from 1/2 days at work...he will take full time off when his mom arrives in another week. My Mom is here taking care of the Big Girls and helping out a ton around the house...my Dad will be up some next week to help out too...it is so great to have so much help!

Maya Update

Wow! Maya is just doing amazingly well! The transition to "no-trach" has actually gone about as well as it possibly could. It has been ONE WEEK, and we have not had any major road blocks. She is actually doing better at night than she did with her trach...she is not needing ANY oxygen, AND since the night nurses do not need to mess with her so much (she had a lot of tubes and wires to keep her from tangling up in), she is sleeping through the night well. So, what are some new things about Maya??? She definitely snores at night, though I must say it is a pretty darn cute snore! She has a hole in her neck, that the doctors hope will heal up on its own in about 3 months, or she will require stitches. I thought maybe with the trach out she would get less of those "glaring stares" from people, but no, now she has a hole in her neck that really gets even more of a glaring stare! We have tried to use bandages, but they just fall off...so Grandma Fran sewed up some clothes to fit her trach site that are held on with paper tape that we use at school or church. But really it is best to keep it open so that it can heal. Oh well, despite the small hole in her neck, most people still say she is really cute...which is definitely TRUE! Maya also likes to make funny sounds with the hole...oh Maya, you silly girl! Otherwise, we still have nursing care this month, Maya is attendding school now full time and the staff is learning to care for her feeding and medical needs for next fall when they will not have a nurse with Maya. Best of all, Maya is loving the great weather and has a ton of energy!

Our lives are changing too! We no longer travel with nearly as much stuff as we used to. We do not have to lug around her enormous suction machine, extra trachs, and trach dressings, saline, humidified noses, passimier valves, caps, and suction catheters, AND we do not have to do trach tie changes every single morning. Dean smiled so big on Sunday as we loaded the mini van for church with one very small diaper bag for Maya. We are also planning on going RV/ camping this weekend and it is so wonderful to think of packing for Maya! We used to have to bring a ton of nighttime equipment when we went overnight places...before we bought our mini-van, we had to take our car and truck when we went to Portland. Now all Maya needs are a few Oxygen tanks (if she needs them), a few nasal canulas, her feeding pump and food, and her monitor...now that should be much easier. My packing list for Maya used to be 2 full columns long (12 pt font) on the computer. WOW...what a change!

Now we are preparing for life without nursing care and baby Teya (I think this is the spelling we will now go with) Nicole. We have already decided that her name means "peaceful sleeper", even though we have not found that definition in any book. There is very little to get ready, just cleaning the house and making sure that the baby clothes are ready to go...it is nice to have a lot already in the house. So you can begin to pray that our family will get some sleep this summer...I think it may feel like 2 babies at night for awhile once we lose our night nurses in July, until Teya sleeps better and we get used to Maya's machines at night time (she still feeds at night and has a monitor that will make noise at times when she rolls around or wakes up, and of course if she is having breathing or heart trouble.)

Thank you all so much for all your prayers and support for Maya. This really is a HUGE step for her! More independence from equipment and nurses ALWAYS being around her, and also just a higher quality of living. We are so grateful that Maya has done so well this week!

Maya's trach is still out after a night's sleep!

GO MAYA GO! We are so proud of our little girl. It is like she has transformed into a new person over night. Her neck is clear (other than an occasional bandage to cover her hole in her neck), and her energy is through the roof! Unfortunately, she did not sleep very long last night (from 8PM-2:30AM), so neither did Dad! However, while she was asleep she did NOT need ANY oxygen, snored pretty good, but never seemed to show any signs of distress. My brother reassured me that his kids snore too! That made me feel a bit better. We really do NOT know what a typical night's sleep will look like yet, but we are fortunate enough to have nursing care for 16 hours a day for a month and then 8 hours (for the night shift) for another month before we lose our care all together. This will give us a real good idea of Maya's progress/ challenges with her trach out before we are on our own.

The biggest concern is that Maya will start to struggle for air as the hole in her neck heals. We can tell that at times she does push air through her neck because it make funny sounds, which I kind of think she likes...the little stinker:-) However, most of the time she is breathing through her nose and mouth VERY comfortably, and like I said before her energy has been amazing...MORE than normal. I am not sure if she is just excited to have her trach out, if her breathing is easier, or what...but she is a happy camper and that is what is MOST important!

We will let you know how our adjustment goes, and how Maya sleeps over the next few days and transitions back to school. Dean just said to me, "I keep wanting to put Maya's cap back on her trach because I can hear her moving air in and out of her airway." We are VERY excited and hope that Maya stays healthy and continues to do great with her trach out!

If you click on the picture below, you can view Maya's hospital experience in pictures.


My Montage 5/13/08

Maya's trach is OUT!

Although today went very slow, we are VERY happy with Maya's progress. We arrived for our 9:15AM appointment with the ENT Clinic. Before we had her trach removed we wanted her to have another round of BoTox to help with her secretions. That took 2 and 1/2 hours to get prepared for (I think mostly because this is only one of the first few times they have done the BoTox in the clinic versus in the Operating room.) Dean and I helped hold Maya while the Doctor injected her 4 times (under the chin), and Maya was certainly NOT very happy. Immediately following the BoTox injections, the Doctor simply pulled out her trach tube...and it was no big deal at all! She continues to be doing well, maybe starting to get a bit tired, from everything, but we could not be happier. Her energy level has been terrific, and she even did alright with our attempts at giving her her inhaled medication through her nose and mouth instead of through her trach. While there have been some serious tears today, there has been many more wonderful happy kicking moments, where it is obvious that she is okay with all that has happened to her today! I think she is also really enjoying having Mommy and Daddy ALL TO HERSELF today. So TONIGHT will be the big test for Maya. We are hopeful that she will do just fine sleeping without her trach for the first time since she was 2 months old...GO MAYA GO!

Maya and her newest skill

Maya and her awesome PT at school have been working VERY hard to teach Maya how to independently ride her tricycle. We heard rumors that she has been making good progress at school, but had not seen her show off her skills at home until this weekend. My friend Whitney was here for a visit this weekend (she happens to be a PT as well, so she is ALWAYS interested in Maya's newest motor skills). Anyways, Maya decided this was a good time to "show off" her newest skills. She is really riding pretty independently...she needs a little motivation by pushing her legs, and then she is off, until of course she crashes into something or tires out a bit. She even giggles at times when she gets the hang of it. Last night she climbed on to her trike all by herself waiting for someone to strap up her feet to the pedals so that she could bike some more. Way to Go Maya! We do NOT look forward to the day she takes off down the street and cannot hear us when when we want her to return...so for now the porch and fenced in trails and black tops may have to serve as her riding surface. Here is some video of her great accomplishment, she gets much better as the video continues.



Maya and her trike

CHARGE get together

Sunday was a wonderful day. Our family drove to Seattle to spend some time with our CHARGE family here in WA state. We never have too little to chat about and there is always something new that our kiddos are doing. Most of all it is fun to see our kids progress every time we meet. We usually meet in the fall and spring to avoid crazy summer schedules and cold and flu season. Unfortunately a number of kiddos were under the weather and could not attend. However the two oldest CHARGE kiddos were there (they are both in Kindergarten, and headed for 1st grade next year). So it was a great opportunity to hear about their school experiences, and to see how they both are doing medically and how their communication is coming along.

We were so impressed with these two big kids! One of them has been off his feeding tube since he was two and has some hearing so his speach and ASL are pretty impresive. When I first met this boy he had just "graduated" from using a walker due to balance challenges. Now he and his BIG Brother are always running around, playing imaginitive games and just being boys!!!

The other girl is so neat for us to connect with because she is the big sister to two little siblings (like Maya will be). Her little sister is just 20 months younger and it is so fun to watch them interact and watch the younger one care so greatly for her big sister. The CHARGE girl has just made some HUGE progress this year in many areas. For a long time her heart kept her from being as active as she otherwise could be and since her heart surgery a few years ago she has learned to walk independently, started going to school, and this year has amazingly learned how to eat all of her food by mouth rather than needing to use her tube...how cool is that! The other amazing thing she is doing is communicating like crazy. She has a Cochlear Implant that allows her to hear, however verbal communication has been a challenge. She has been learning sign language this year, and it is amazing to watch her communicate...oh to see the day Maya can communicate like these two kids would just be amazing!

Both kids are also really healthy and do not have to be SO concerned with germs, though it is still a bit more challenging for them to get over a clod than the average kiddo. I am so blessed by these families and their beautiful children. I am reminded too at how special the siblings are as well. The care their siblings have for them is unbelievable...they also seem to be extremely compassionate children who are very protective of their CHARGEr sibling. Thanks families for being such an inspiration to our family. You are all so wonderful and I look forward to a gatheirng in the Fall. Hopefully more of our younger friends will be there too! I think by then, some of them will be walking!