Next week

We have a few days to get ready for another mad dash out of state. This time Stew is heading up to Salt Lake for a week with Kory for a new set of prosthetic legs, now that he is healed from his surgery. And I am headed to Denver with Mattea for her tonsil and adenoid surgery. Onny and Marisol are going with Dad, and Bubs is going with me. Another fun week off from work.

Lots of pics!

More pool pics!

Onny is starting to like the water!

Bubs is having a blast!

Sorry for the sideways---Mattea is modeling a new outfit with brother Kory

Onny's new outfit

My Bubs the gymnast

Window seat

More fun in the pool

Pool Pics

Okay, here's a new pic of our little princess in some new school clothes.Not sure if you can see or not, but she is newly missing her top front tooth, too! She is now a veteran walker, and no longer scooting around on her bottom.
Here's Mattea in the pool. Daddy didn't get outside in time for all of her antics. I just got a new camera though, and she also just got a new swim suit, so better pics soon. She totally LOVES the pool!

Here's Kory the Goof! He's enjoying the water after being off his feet from surgery 2 weeks ago.

Bubs is always the first one in and usually the last one out. He insists on having his latest group of action figures along with him for the swim. Last week it was Spiderman, this week it's Wolverine and Iron Man.

Back from another trip!

We just got in from a week in Salt Lake City for Kory's leg surgery. Kory is doing great, the surgery went fine. He will be on one leg and an adapted walker for a few weeks and hopefully a break from his chores.
I finally got to meet Alexander, my 3-week-old grandson and he is just adorable! He has a gentle, laid-back spirit and he is very handsome! It is going to be fun watching to see if he will be a blue-eyed blondie like his brother and sisters, or if he will have brown eyes or hair. Neither is apparent yet.
It was nice to visit and shop with my daughter Serena, and spend some time with my Mom. I wish we lived closer and could get together more often.
The little ones, Estuardo and Onnolee, and the grandchildren all had a large time with many fun events for the holiday weekend. Estuardo has fallen in love with waterslides and trampolines, and Onny is starting to break out of her shell and interact with the other kids. We went to a cook-out at the in-laws for 4th of July and had a great time except son-in-law Enoch had a mishap with a kitchen knife and ended up with some stitches in his hand.
Kory's got to go back up to Salt Lake the first week in August to have a new pair of legs built and we are trying to reschedule Mattea's tonsillectomy in Denver for that same week, so we can split the kids up and get it all done at the same time. This has been one busy summer!
I am managing to keep up with my school, but I am not sure how. It's been tricky! I am maintaining my weight loss too.
My digital camera is broken, so I had to take pics on a disposable. As soon as I get them developed I will post all the fun pics from the trip!

Just needing prayer

There are a few things burdening my heart right now that need the power of prayer. Can't post details, just need prayer. Thanks.

Catching up...

If you take the ottoman and flip it upsidedown it becomes a boat. ..

...or a bed...

This boy can sleep anywhere...

Filling Daddy's boots...

I am working on getting updated pics of all the rest of the kids...

It seems anymore there are just not enough hours in the day, and the heatwave of summer has finally hit. I am so tired by the time I sit down, I just haven't been up to keeping this blog up to

date...

The continuing pediatric cardiology saga here in Albuquerque hit its peak this week. We had fired Mattea's assigned cardiologist a few months ago and drove up to Denver to see wonderful Dr. Ivy. Well, our pediatrician convinced us to try one of the other cardiologists on the team so we could alternate between Denver and Albuquerque so we reluctantly agreed. Mattea's sleep study showed severe sleep apnea and they recommended an urgent tonsillectomy and adenoidectomy. The ENT docs wanted cardiology to clear her for the surgery, so now we make this appointment with the new, different cardiologist here. So what does the new, different cardiologist tell us, knowing the situation with infamous Dr. L?? She says that either we take the whole team of cardiologists, including Dr. L, or we can go to Denver for her care. So my husband told them we choose Denver. End of that chapter. I guess if she needs emergent cardiology care we will have to take her to the "other" local hospital emergency room and/or life flight her up to Denver. Sheesh...

Next Wednesday we pile into the van and head back up to Salt Lake. Kory is scheduled to check into Shriner's on Sunday afternoon for Monday morning surgery on his leg. We will spend the rest of the week visiting family, and we finally get to meet little (10 pounds already) Alexander. I can't wait to meet him, and to visit with everyone else! We hope to do some fun stuff while we are there, going to a water park and to a children's museum, and hopefully go shopping too.

Just some random pics...

This one was supposed to be LAST but I couldn't get it to go there...Estuardo finally sat still long enough to relax and fall asleep. Actually, looks like he fell asleep mid-lunge.

Just a goofy pic of Jesse wearing Estuardo's dog hat...

Everyone loves black olives!

Kory and Jesse in competition on the Wii...

Ignore the dates, my camera battery keeps dying and restarting the calendar.

More pics soon...

First things first, here's ALEXANDER!!!

Here's the newest little member of our family!!!

Little Alexander and his Mommy came home from the hospital today. Both are doing great!

A general update...

Well, my camera is missing. I've got pictures on it waiting to post and I have also missed quite a few Kodak moments the past few days :o( so I figured I will post a general update so I don't forget all that has been happening around here.
From the youngest on up---
Onny went for her first hippotherapy session last week and she really enjoyed it! Her early intervention therapist recommended her for it, and her sessions will be covered by the state. She is starting to talk more. It's strange to actually hear words coming out of her mouth. Then again, it's also strange listening to her talk in her Onnly language too. We are trying to decide what step to take next with her. She can either go to preschool at the local public school or to early headstart at the district early headstart program. The preschool is two days a week and right down the street but almost all the kids are at least 3 years old. The early headstart would be 5 days a week with kids her own age, at a school about 15 or 20 minutes from here. The third option would be the local Montessori school but we would have a hard time fitting that one into our budget. I am leaning towards the headstart but we would have to transport her every day and her school is in the opposite direction from Kory and Estuardo's schools for the fall.
Estuardo is on the go continuously and his vocabulary and conversational skills are getting better every day. I am working hard on manners and appropriate behavior with him. I've been getting him back into listening to stories I read to him. His 3 current favorites are the Llama Mama books, Yolen's How Does a Dinosaur... series, and most recently The Bear Snores On and the rest of the bear books in the series. We are building up quite a library.
Marisol is getting ready to go to summer camp for a week at New Mexico School for the Blind in Alamagordo. She leaves in about a week and a half. She will be taking the group bus down on a 4 or 5 hour drive to get there. Last year she had a blast and she's so excited to go again this year.
I drove Kory up to Salt Lake City last week for an appointment at Shriner's. His right leg has been growing very crookedly and he's getting kind of knock-kneed. We thought it was his prosthetic at fault but it's his leg. So we head back up the first of July for surgery (and of course to visit my daughter's family and that cutie pie new little baby of hers). We are going to try nd get up there a few days ahead of surgery so we can play a little bit before Kory is officially off his legs for several weeks.
Jesse had his yearly check up at the doctor's today and now has several referrals and lots of work ahead of him with therapies etc. The pediatrician says she wants him listening to books on tape and engaging his mind instead of sitting and staring all day.
Mattea has had several appointments this last couple of weeks. This week she saw the developmental pediatrician who released her from her care as she is doing so well. We also saw the pulmonologist who is starting her on a steroid inhaler to help her lungs a bit. He also said he might be able to help us with the continued quest to have her tonsils taken out. He said to wait and see the results of her sleep study--- which is actually tonight, right now in fact, and thought the results might be pretty much directly pointing to having the tonsils taken out. Then we would have to decide whether or not to take her up to Denver for the procedure or just have it done right here.
The most exciting thing for Mattea this week is that she started summer school, finally! I haven't heard from them as to how she is doing. I wonder if they realize she has never before had the opportunity to attend school. I hope they will be able to teach her lots of new things.
To be continued tomorrow...

8 pounds 15 1/2 ounces...

My brand new grandson Alexander was just born about an hour ago! No pics yet but hopefully soon. I will be headed up to visit on July 1st. I can't wait!!!

Mattea can see

Lou hasn't told you this but according to the eye doctor yesterday Mattea can see what we don't know is if she is far sighted or near sighted. The eye doctor was more interested in Esturado than making that clear. So another issue down and with good news of a sort.
Lou is off to Salt Lake City now with Kory to see if we can get him a better set of legs and what has to be done to correct the damage already done with the crappy set he has now.
I am home with part of the family and she took the other part. She just might get to see a new grandson while she is there if he decides it is time to make his grand entrance or it will mean another trip to salt lake for her as soon as she can.

MY eyes :o(

I forgot to post about my eye appointment last week prior to our trip to Denver. Last year the eye doc was unwilling to dilate my eyes because I had Estuardo with me and she was worried he would get into too much mischief. This year, I made him stay home with Dad while I went. The vision test didn't go very well compared to last year. Then when she dilated my eyes, she said I have beginning macular degeneration :o(
My Mom has MD also, much more advanced, but she is 90 years old.
So I have been doing research about how to prevent mine from getting any worse, if possible. I am kind of bummed, but sporting new blue-blocker sunglasses and taking lots of anti-oxidants and other nutritional supplements. I'll do what I can. I don't want to go blind, I just bought me that really cool new sewing machine and I want to get some use out of it... (sigh)

Tubes!

Mattea had her ABR hearing test this morning and they also did put PE tubes in her ears. After the tubes were in, she tested with normal hearing in at least one ear!!! So...maybe those babbles will start turning into words...and now she will be able to hear the music.
Tomorrow is her ophthalmology appointment...

The transplant question

Several people have asked about Mattea getting a heart transplant, including me!
The reason is that Mattea's lungs are also damaged. That's also the reason she can't have her heart repaired. The solution sounded simple to me, why not a heart-lung transplant? The cardiac nurse at Denver Children's Hospital explained to me that the only 100% cure for pulmonary hypertension is a lung transplant. However, lung transplants have a very, very poor mortality rate with something like only 5 or 10% surviving more than 5 years. The heart transplant part would be easy with a high success rate, but the lung transplant part would unfortunately probably shorten her life, not to mention what it would do to the quality. We were also told that there are people in their 50's with pulmonary hypertension, who have been medically managed only. So if that's the case, then it may not be the death sentence we thought it was.
Mattea is a happy camper this morning scouting around looking for trouble, without her oxygen tubing trailing her. Viva, Viagra!

Quick summary---

Denver Children's Hospital is a wonderful place!! I am so glad we chose to come. Dr. Ivy and his team of nurses and nurse practitioners were fantastic. They spent as much time as we needed them to and Dr. Ivy even pulled up a chair and sat to answer questions.
So here's the end result--- Mattea had an echo and an EKG and some labs done. Plus they reviewed her cardiac cath results from Albuquerque. She has Eisenmenger's Syndrome. The blood pressure in her lungs should be way lower than her regular blood pressure and hers is the same. Unfortunately this means she is definitely not a candidate for surgery, nor will she likely ever be able to have her heart repaired. In fact, he said the surgery would most likely shorten her life rather than lengthen it. But they are major pulmonary hypertension specialists and were very encouraging about medical management. And seeing her response to the low dose of Viagra that she has been on has been very encouraging to us. So yesterday they discontinued her Captopril and raised her dose of Viagra to a more normal dose. When they checked her O2 sats on her 2 liters of oxygen they were 90! So he said we could wean her off the O2 during the day as long as her sats stay above 85. I am curious to see if the higher dose of Viagra has any more effect. They want to follow her and see her every six months, with in-between check-ups in Albuquerque, with a new cardiologist. (The ones who followed her 2 weeks ago) Mattea has a sleep study in the next few weeks, and after we have those results we are supposed to get back with them as they will arrange for her to have her tonsils out here in Denver if they won't do it in Albuquerque. Of course, Daddy says the tonsils come out in Denver!

IEP today, and now we are in Denver!

Mattea's IEP meeting was today, finally! They are going to start her out in summer school, 3 days a week for 4 hours a day. So far, so good. She will have a full-time aide and for the summer, the PT, OT and speech will be consultative, meaning they will train the teacher to work with her. But in the fall she will have regular PT, OT and speech therapies. (They are not staffed for this over the summer) Everyone at the school seems to really enjoy her so I am thinking positive. They were amazed at her progress since they first met her in February.
After the meeting we ran to Walgreen's Option Care to load up the van with oxygen tanks and then we left for Denver. It took us about 8 hours total to get here including a one-hour stop at Denny's for dinner. Tomorrow morning we head to Denver Children's Hospital for Mattea's appointment with Dr. Dunbar Ivy!

Oh, Onny!!!

This is what happens when you turn your back for 2 seconds in this house...

Onny got into the little bottles of food coloring in the kitchen yesterday. This is her after I already had removed the blue-soaked clothes she had on. You should have seen the couch.

Lots of appointments and travel...

This Friday is Kory's meeting at school to discuss the results of his testing for the gifted program. I am curious, but no matter what the testing showed, I know for myself that he is very intelligent...also very 13 and very mouthy... He's been accepted into a private school for next year rather than our local public school system. I did not like the sound of the gifted program in the public school as there was no focus on math at all, just a pull-out class focused on language arts. And no way do I want him in our local public high school in a few years. We are very, very disappointed in the high school.
Next week is our appointment with Doctor Ivy in Denver, Mattea's pulmonary hypertension doctor. I am anxious to meet him, and I am hoping for a good outcome. She's doing wonderful on the low dose of Viagra that he recommended and that the docs here ultimately claim credit for (grrr...). Also, the same day we leave, we have an appointment at the school to finally start moving on her placement. They are going to hopefully set her up for summer school. I think she is very ready to start now.
Then the following week, Kory has an appointment at Shriner's in Salt Lake for his legs. His prosthetics are ready to fall apart and plus we noticed that the leg he had surgery on looks all out of whack. He originally had the surgery because his (partial) tibia was not seated in the knee joint but joined to the outside of the knee. The orthopedic surgeon moved it into place about 2 years ago. Well, now it looks like it is angled to the inside of his knee joint instead, the opposite of what he was born with. Almost like it came back out of alignment in the opposite direction. His posture and gait are horrible. I am afraid of what it is doing to his hips. So hopefully they will be able to help him with that.
In the next few weeks, Mattea also has a genetics appointment, a sleep study, and an ABR hearing test, and I am sure there are more appointments that I am forgetting about. Her ophthalmology appointment is in July, I think...goodness we are going to be busy this summer!!! (And I still have to schedule dental check-ups for all the kids and an eye appointment for me, Mom.)

GOT IT!!!!!!!!!!!!!!!!!!!!!!!!!

For a $15 co-pay!!! Our insurance finally got its act together just in time, as we only had one dose left. Mattea has her Viagra!!! And she is doing fantastic!

My husband, in his usual tactful way ;o) says that maybe Dr. L refused to prescribe the Viagra because he was afraid Mattea would be taking away from his share.

Thank-you all so much for your prayers!!! We were ready to go to Canada if we had to, but this will be a lot easier.

Still not straightened out

It's good to be on my days off, I didn't get much sleep the first half of the week and I am really tired! We still don't have Mattea's Viagra situation straightened out. We have one or two more doses left, and still no positive word from Walgreen's. So tomorrow I have to get on the phone and get it straightened out or we will have to take her on back to the hospital for more. Or go bargain shopping for Viagra. It sure is working well for her! At dinner tonight in her high chair, she was actually vocalizing, saying "Ba, Ba, Ba, Ba" very clearly. First time she's ever done that!
Anyone know where to get Viagra for inexpensive?