Visiting Amy in Minnesota

Lily and I got to take a plane ride to visit Amy and her new baby in Minnesota. Aside from losing one day in urgent care with Lily. . . we had a wonderful visit. Turns out Lily had strep throat and a bladder infection. :) Amy and Rudy were so nice to show me many of the sites and to take us out to eat etc. I also got to be there for little James' baby blessing which was very special. James is super handsome!! And Amy's girls were so sweet to be with. Aubrey even made my bed every morning. I wish we lived closer!!
Lily loves Micky and Minnie Mouse. So we borrowed Aubrey's Micky to keep her happy in the car as we drove around St. Paul.

New Beginnings

School is in session! I don't know if you have seen this commercial. It has always been a favorite.




I hate to admit it. . . but I felt like that guy when school was just about to start. So excited! I want to be that mom who hates to see their kids go off to school and misses them while they're gone etc. etc. The truth is, the summer was just a few too many parties for me. :) The kids were really getting on each others nerves, too. We all needed just a little bit of space. So far I have been loving the time with Jojo and Lily. I am also enjoying seeing the kids trying new things, learning and growing.

Here is Joseph on his first day of 3 yr old preschool (just two mornings a week).
He was so ready and is already loving it.

Eryn and Anna on their way to 1st and 3rd grade. Both are doing very well so far.

Lily is all fun these days and trying new words regularly.

Happy 10th Anniversary

Ten years and four kids later I am deeper in love now more than ever! Happy 10th Anniversary!

Trying out her first wheelchair!

We had Lily's wheelchair assessment at Shriner's a few weeks ago. It was so exciting to let her sit in the tiny trial chair and give it a try. Take a look!



On the subject of Lily's mobility. . .

As far as we can tell, Lily cannot feel or move her legs. She is 18 months old and doing so well. She is basically keeping up with her peers cognitively. But children her age are already running in circles around her. Joel and I want her to have more normal experiences, to be able to explore her world more freely and to be able to play outside. When she began pulling herself around on the floor we immediately saw an explosion in her language and development. We are convinced that mobility and independence is a huge key to her growth overall.

We have not given up on Lily's chances for walking with bracing. Although it may be slim chances, we will continue to work with her, preparing her for the opportunity. But, we refuse to let her development stall any longer. The bummer for us is that it will take until October 1st to get her chair. Who knew it took three months to get a wheelchair! Needless to say, we can not wait to get her in the little pink wheelchair we ordered. :)

Smith Family Reunion

Here are all of the Smith grandkids together at Bear Lake. We had a very relaxing time eating, playing games and visiting near the lake. Most activity happened outside in the sunshine, which was great! The water was cold, but the kids couldn't stay away from it. Lily even got to splash her hands in the water from a paddle boat.

Ammon, Mike's oldest and the oldest grandchild, just turned 18! I can't believe it. I remember holding him as a baby like it was yesterday. He's going to BYU Idaho in the Fall.

A Long Month of FUN!

After all of our medical drama, it was sure nice to take a long month break full of vacationing and fun. We started by pulling the girls out a little early from school and going to DISNEYLAND. This trip had been planned for a few months and over that time Anna and Eryn worked hard to earn their tickets by doing chores and practicing responsibility. Everyone had a really nice time. Joel's brother and sister and their families joined us for three of the four days which made everything more fun.
As soon as we got home we had a Family Reunion with all of Joel's immediate family.

The above pictures were taken in our backyard. It was great to capture Joel's entire family in one photo.

Following that reunion we went on to a very cold reunion with Joel's dad's family up in Heber. The weather was soooo cold and rainy that we could all see our breath when we talked. Everyone wore lots of extra layers and stayed indoors as much as possible.


We then went on to two more big family gatherings on my side. More pictures to come from my side of the family.

In the meantime everyone is pretty healthy and doing well. I am extremely happy to be back from one motel and four cabins and able to get a vacation from our vacation. :)

Good News

Anna is pictured here with her sweet cousin Ileina. Our bad luck rubbed off on Ileina last weekend when we were together and she fell and broke a bone in her shoulder. It just so happened that she was at Primary Children's Orthopedics the same day Anna and I were there. Anna got her cute pink cast on and Ileina got a sling. The good news is that we thought Anna's cast would be on for six weeks, but we were told she only needed one week in a cast!! I couldn't believe it. We are so happy that our summer fun won't be hampered by a cast. Ileina also got some good news. No casting or bracing necessary. Just a sling for two weeks. Yay. We like good news.

Eryn also had her follow up appointment with Urology and we learned to catheterize her through her belly button. I am happy to say that so far so good. Cathing has been pretty easy. We still have a lot of kinks to work out, but things are looking good. Eryn's foot is also on the mend. Her walking is great now and the affected muscles are finally starting to show some action and strength. The good news for Eryn is that she can now go swimming and take baths! Hooray. Thanks for all of your sympathy and concern. It's nice to be sharing some good news for once.

Two Words: Monkey Bars

Eryn's Doing Well

Sporting her purple cane.

Cousin Ileina bringing silliness and cheer.

Anna, Noah and Joseph visiting.

Two volunteer dogs came and visited her in her hospital room. She is obsessive about dogs and was thrilled to have them come.

Day by day Eryn's walking has shown improvement. She started walking with a cute purple cane that she got from physical therapy. Then after a few days she started walking without the cane. Now she is walking and running! We are very happy for her. My main concern is that the affected muscles in her foot still have not shown signs of improvement. In my opinion she is walking despite her disability in the foot. We'll see what happens. In the mean time. . . here are some cute pictures of Eryn from her hospital stay. Thanks for all of your sympathy and concern. Eryn went back to school today and when she walked into school all of the kids were so excited, saying, "Eryn's back" and "I'm sorry you had surgery Eryn." Too cute.

Eryn's Back in the Hospital

This is a long overdue update on Eryn.

Eryn has been diagnosed with mild Kidney Disease. In December when we took her into the ER for bloody stool we found out that her kidneys were suffering a great deal. We found during her stay at the hospital and thereafter that her kidney function improved greatly by keeping her bladder empty. So we have been working with Urology on a very regular basis to try and resolve the issue of her poorly emptying bladder. We have no real diagnosis to explain why she can't empty her bladder. We have done multiple tests, with no real answers. So the best we can do is try to keep her going to the bathroom regularly (even though she doesn't always feel the need to go), and finish emptying her bladder through a tube. She has had a suprapubic catheter placed for the past three months. This is a tube that comes out of her bladder through her belly. The tube had an on-off switch, so she could be bag-free in the day. She became very comfortable with this and would simply open the tubing after peeing on the potty (as long as she made it in time). That would ensure that she was completely empty. The problems we ran into with the suprapubic catheter were: that it needed to be changed out every 6 weeks (not a permanent solution) and each time she had to get it changed she had to go under anesthesia, then we would also have accidents with the tubing (twice we accidentally cut it with scissors, and it got pulled on really hard). Our goal during the time she had the suprapubic catheter was to teach her how to catheterize herself (through her urethra). This was a very stressful process. Sometimes after practicing I would just break down crying because it was so hard. She hated it and spent the entire time fighting me. I also hated it and felt like my attempts were pointless. The Nurse Practitioner we have been working with is wonderful. I couldn't imagine working with anyone better and she also ran into major difficulty working with Eryn to place the catheter. We started seeing a child psychologist who was very helpful. She helped us to eliminate the stress involved by setting boundaries and creating incentives for Eryn. Even with all of the help we were getting we still were unable to get a catheter in. Eryn had such a terror/fear of putting it in. We feel like the fear came from bad experiences where a catheter was placed in the hospital and ER. At those times her bladder was so over-filled that it was probably tilted and it took the professionals quite a few tries to get it in. The trauma from those experiences stayed with her and she could not imagine inflicting the same pain on herself.

So. . . here we are in the hospital recovering from surgery. We decided with the team of Urologists that the best thing for Eryn long-term was to place a Monte Stoma. The stoma is a little hole in her belly button that a catheter can slide through to empty the bladder. From what we hear these catheterizable ports can be very convenient. Our hope is that Eryn can really get back to some sense of normalcy and at the same time manage the health of her body.

Eryn is now recovering from surgery and doing pretty well. We are concerned about one of her feet that has not gone back to normal since coming out of surgery. It is turning in and she can't move it properly or place pressure on it to walk. It looks like she may have had her leg positioned during surgery in a way that put pressure on a nerve going down the side of her calf. Hopefully with some physical therapy and time it will go back to normal. Until then, she may need to use a walker.

In the mean time, Eryn has enjoyed visits from family and friends who are concerned for her. Her cousin Ileina was just here pushing her in her wheelchair and playing games with her. She brought Eryn a lot of joy. Hopefully she can go home tonight or tomorrow.

I hate to be a downer, so I think I haven't posted about Eryn much because everything has been so hard. The Relief Society has had to step in and help a few times because of the stress involved with so many appointments and all of the "homework" we were getting from Urology. But at this point we feel really good about this surgery and feel like it is a step toward more independence and normalcy for Eryn.