As you know from the previous post, PJ has to get a spica cast put on, which is a cast that goes from the chest to the ankles. Also, the previous post was loaded with my anxious, nervous heart. It was just so fresh and overwhelming! The day after I posted, I got a call from the orthopedic surgeon, which is rare because usually it seems like we talk mostly to the nurse practicioner for the doctor or the coodinator, anyone beside the doctor. But, she called us personally to talk about the procedure and what was involved with it. She started by saying that she wanted his hip to loosen up from being in a brace for the past 2 1/2 months. She said she wanted to wait for at least 2 months before putting him in it. Although we just wanted to get it started and overwith, I can't help but be relieved and excited that I get to see PJ's chunky thighs for 2 more months!! Also, that cuddle time is oh-so-precious. We are definitely taking advantage of that!! She also informed us that they would check his hip 6 -8 weeks in to see if it has set in the joint and if so, he can come out of the cast and be put back into the brace. That would be awesome! We are praying that we would be so blessed to get him out of it before 12 weeks!! If not, we will roll with the punches! The procedure itself is only about an hour, which is great, not a lot of time for him to be under.
Another great thing about waiting a couple months is that we can start physical therapy for PJ. This is going to be great for him to strengthen his core muscles and loosen up some muscles that have gotten tight due to the brace he was in. She was also saying that the water is great for loosening up his muscles. That means me getting in a swimming suit....what??! Don't you know I just had a baby?!! ha!! Whatever is best for PJ right?
Tuesday we are going to Reno to get him fitted for foot braces to wear at night to fix his feet and toes. This too is another praise because we get to get this fixed before he gets into the cast.
We continue to rest in God's love and hand in our lives. I just look back at PJ's short life already and God's hand is in every moment. It is so awesome to be able to witness His power and His love for us...very awesome.
Now for a Daniel update...as you know, he is in pre-k. I can't tell you how much him being in pre-k has taught him. He is such a smart little boy. Each week of school they focus on a different letter and he as been looking forward mostly to the letter "P" because they are going to have a pajama/pizza party. This is the week!! Tomorrow is his party and we have been going back and forth as to what pajamas to wear. He has a few good buddies at school and he has been asking to wear his Buzz Lightyear jammies because there's a lazor "button" so he can lazor his friends. I told him that he couldn't...well, because they are from last year and the pants stop at his shins and the shirt reveals his ever-so-cute belly button. I would say it's borderline inappropriate! haha. I'm trying to talk him into his Cars jammies. Here's to coaxing him!
We've been doing nightly devotions with him as a family. Sometimes we do them after dinner or before bedtime. Last night we did the devotions about Lot and his wife and children fleeding Sodom and Lot's wife turning into a pillar of salt. Talk about the wrong devotion to do before bed! Daniel was asking if he was going to turn into a pillar of salt if he disobeyed. Ummm...no. Let's just say we had to do an extra amount of praying while tucking him in. :-) He hasn't said anything this morning, so let's hope he forgets about it for a while. Otherwise, he's loving the devotions. He drew a picture the other day of Adam and Eve in the garden with a snake under the tree. I tell ya, these kids remember E-V-E-R-Y-T-H-I-N-G!!! Trust me, I'm trying to be on my best behavior so he doesn't tell Nanny and Pappy what mommy did the other day! I'm sure it's already happened but my parents don't tell me to save me the embarrassment!!
Hope everyone is doing well and trying to make it through winter. This is a tough time of year with the dreadful weather, being stuck inside, and breathing the recirculated air in the house for too long! No wonder we keep getting colds! That reminds me...I should go take an Airborne!
Thursday, January 26, 2012
Sunday, January 22, 2012
Back from San Francisco, yet again!
As most of you know, we made the treck to San Francisco this past week for PJ's Spina Bifida Clinic, despite the weather over Donner Pass. This is our 3rd trip since he's been born that we've had to go to San Fran, yet God has provided for us the means to make it there and to not have to worry about how we are going to get there. We were anxious to get there because PJ has been in his Rhino Cruiser brace for 6 weeks and we were hoping and praying that there had been great progress. The trip also included a little fun for Daniel since we had just celebrated his 5th birthday! I can't get over the fact that we have a 5 year old child, who will start kindergarten this year. GULP! I'm not going to talk any more about that because the lump in my throat won't allow me! As you have read from the last post we took Daniel to the Exploratorium...and oh-my-goodness...how much fun! I think we were there for a total of 4 hours! It was a blast and Daniel enjoyed every second of it. It is the best feeling to see your child happy.
Friday, the day of SB clinic, started off with a hip x-ray followed by a short walk down Irving to go to our favorite hole-in-the-wall sandwhich shop called the Yellow Submarine. We walked in the rain, umbrella in tow and enjoyed our lunch before the long afternoon waiting for us. When we got back to UCSF we went and took PJ to get an ultrasound of his head to see if the fluid had increased between his ventricles. We hold our breath every clinic awaiting the news as to whether his levels have increased or not. Once we were done with the ultrasound we took up up to the 2nd floor to clinic. Keep in mind Daniel is with us along this journey. And if I do say so myself, he did really well. He just played his leapster and watched movies the whole time. He was very behaved! Praise the Lord! The first person to see was Dr. Shalet, who is with the nuerosurgery team. He said that PJ's levels have remained the same and his soft spot feels great!!! What amazing news to receive!! NO SHUNT SO FAR!!! The longer we make it and the older he gets w/o needing one is a miracle! Dr. Shalet said that most kids get it by 6 months and a few between then and a year. We have a quite the ways to go because he is only a mere 16 weeks old, but we are trusting God and holding hope that whatever happens is in God's plan and we will be ok with it. The next person to see was the physical therapist, Monica. She's awesome! She said that he looks great, but encouraged us to do more tummy time, but we reminded her how impossible it is to do much tummy time because of the massive brace he's been wearing. He holds his head up great when sitting up, but his core muscles need some work. She also prescribed us braces for him to wear on his feet at night time. When relaxed his feet should be at a 90 degree angle and they don't point up as much. Also, his big toes look like they are flexed, like he's curling them down. We've been massaging them during diaper changes, but the braces should help straighten them out as well. What's another brace, we've already been through 3 of them already! Next dr. to see was Dr. Delgado. This is the biggie. She is the orthopedic surgeon who has been monitoring his hip and prescribing the braces for his hip. We went to another room to view the x-rays and it was like someone's puppy had died. There was his x-ray, chunky thighs obvious, and his left hip completely out of socket. The brace hadn't done anything for him. HOW DISAPPOINTING. We honestly were shocked because we thought we saw a difference in the way his leg was positioned. It had become more parallel with his right leg so we thought there had been some difference. So, then she proceeded to tell us the next step. He will have to undergo a little "procedure" where they put him under and cut a tendon in his hip area. The tendon has become tight and shorter which prohibits his hip to go back in. Along with that they will put him in a Spica cast. This is the WORST part for us. The cast goes from his chest all the way down to his ankles. His legs will be in the wish-bone position as well. Of course there will be an opening for diaper changes...but that will be an adventure in itself. How do you keep a cast clean on a baby who manages to have explosions like no other?! The dr. said that parents get creative with saran wrap and tape....hmmm....I'm going to have to do some researching on this one. The cast will remain on for a total of 12 weeks (I just want to cry!) with a cast change at 6 weeks in. I just can't believe it still. It's funny because we'll forget about it for a while and then it hits us like a ton of bricks. I just hope that he adjusts to it. If he can adjust to it then I'll be ok, but if this is something that we have to suffer through, I just don't know. I know this is best for him. The dr.'s said that it's our choice. If we were to decide that we didn't want to do it, one leg would grow longer than the other, he would need special lift shoes, and then it would become painful. Of course we don't want that! That will take place in the next couple weeks. Yes, that means we have to go back to San Fran. One thing I know is that God has a wonderful plan for our PJ. He has great things in store for him. Can you imagine his story in 20 years?! I'll be honest, it's hard to have a good, positive attitude right now. I guess I just want to get this all started so we can get through it. Proverbs 3:5,6 and Jeremiah 29:11 right?! His strength is made perfect in our weakness. I am praying for strength! Sometimes it's hard to remember that 12 weeks isn't that long in the grand scheme of things, but thinking of all he's been through already, it's tough. God will be glorified through all of this, there's no buts about it! Please pray that this procedure will work and that PJ will adjust to it quickly. If you're a mom, you know that there's nothing worse than seeing your child in pain and there's nothing you can do about it. God has shown His power and His love for us so much, so I know there's no need to worry. Maybe I need to read Matthew 6 again...
Thank you, everyone, for your prayers and your encouraging words. They mean SO much to us, words will never be able to express our appreciation and thankfulness.
Friday, the day of SB clinic, started off with a hip x-ray followed by a short walk down Irving to go to our favorite hole-in-the-wall sandwhich shop called the Yellow Submarine. We walked in the rain, umbrella in tow and enjoyed our lunch before the long afternoon waiting for us. When we got back to UCSF we went and took PJ to get an ultrasound of his head to see if the fluid had increased between his ventricles. We hold our breath every clinic awaiting the news as to whether his levels have increased or not. Once we were done with the ultrasound we took up up to the 2nd floor to clinic. Keep in mind Daniel is with us along this journey. And if I do say so myself, he did really well. He just played his leapster and watched movies the whole time. He was very behaved! Praise the Lord! The first person to see was Dr. Shalet, who is with the nuerosurgery team. He said that PJ's levels have remained the same and his soft spot feels great!!! What amazing news to receive!! NO SHUNT SO FAR!!! The longer we make it and the older he gets w/o needing one is a miracle! Dr. Shalet said that most kids get it by 6 months and a few between then and a year. We have a quite the ways to go because he is only a mere 16 weeks old, but we are trusting God and holding hope that whatever happens is in God's plan and we will be ok with it. The next person to see was the physical therapist, Monica. She's awesome! She said that he looks great, but encouraged us to do more tummy time, but we reminded her how impossible it is to do much tummy time because of the massive brace he's been wearing. He holds his head up great when sitting up, but his core muscles need some work. She also prescribed us braces for him to wear on his feet at night time. When relaxed his feet should be at a 90 degree angle and they don't point up as much. Also, his big toes look like they are flexed, like he's curling them down. We've been massaging them during diaper changes, but the braces should help straighten them out as well. What's another brace, we've already been through 3 of them already! Next dr. to see was Dr. Delgado. This is the biggie. She is the orthopedic surgeon who has been monitoring his hip and prescribing the braces for his hip. We went to another room to view the x-rays and it was like someone's puppy had died. There was his x-ray, chunky thighs obvious, and his left hip completely out of socket. The brace hadn't done anything for him. HOW DISAPPOINTING. We honestly were shocked because we thought we saw a difference in the way his leg was positioned. It had become more parallel with his right leg so we thought there had been some difference. So, then she proceeded to tell us the next step. He will have to undergo a little "procedure" where they put him under and cut a tendon in his hip area. The tendon has become tight and shorter which prohibits his hip to go back in. Along with that they will put him in a Spica cast. This is the WORST part for us. The cast goes from his chest all the way down to his ankles. His legs will be in the wish-bone position as well. Of course there will be an opening for diaper changes...but that will be an adventure in itself. How do you keep a cast clean on a baby who manages to have explosions like no other?! The dr. said that parents get creative with saran wrap and tape....hmmm....I'm going to have to do some researching on this one. The cast will remain on for a total of 12 weeks (I just want to cry!) with a cast change at 6 weeks in. I just can't believe it still. It's funny because we'll forget about it for a while and then it hits us like a ton of bricks. I just hope that he adjusts to it. If he can adjust to it then I'll be ok, but if this is something that we have to suffer through, I just don't know. I know this is best for him. The dr.'s said that it's our choice. If we were to decide that we didn't want to do it, one leg would grow longer than the other, he would need special lift shoes, and then it would become painful. Of course we don't want that! That will take place in the next couple weeks. Yes, that means we have to go back to San Fran. One thing I know is that God has a wonderful plan for our PJ. He has great things in store for him. Can you imagine his story in 20 years?! I'll be honest, it's hard to have a good, positive attitude right now. I guess I just want to get this all started so we can get through it. Proverbs 3:5,6 and Jeremiah 29:11 right?! His strength is made perfect in our weakness. I am praying for strength! Sometimes it's hard to remember that 12 weeks isn't that long in the grand scheme of things, but thinking of all he's been through already, it's tough. God will be glorified through all of this, there's no buts about it! Please pray that this procedure will work and that PJ will adjust to it quickly. If you're a mom, you know that there's nothing worse than seeing your child in pain and there's nothing you can do about it. God has shown His power and His love for us so much, so I know there's no need to worry. Maybe I need to read Matthew 6 again...
Thank you, everyone, for your prayers and your encouraging words. They mean SO much to us, words will never be able to express our appreciation and thankfulness.
Thursday, January 19, 2012
Birthdays, Boys, and the Bay
A brief disclaimer as always: this is Mitchell. Also this blog is very photo-intensive. The faint of heart and the epileptics, may want to look away.
That being said its been a while since I've been on here. But I couldn't resist blogging about today's activities. For those that don't know we are back in San Francisco for follow up for PJ. We decided to have Daniel come with because it was his 5th birthday last Tuesday, Jan. 17th. We also came down early so that we could get an X-Ray for PJ prior to our appointments tomorrow.
When that was done we wanted to do something fun and "Big City" for Daniel. We were down to the Zoo and something called the Exploratorium. Due to the weather we chose the Exploratorium. For those of you from Minnesota it is the same as Science Museum. I was telling Heather earlier today that I can't remember how many times we went to the Science Museum on field trips and how great it was.
It was truly worth the price of admission to watch Daniel explore the Exploratorium. (Pun intended)
Oh let me back up as I intro these photos. Daniel had a bowling birthday last Saturday, Heather will blog about that later its late and I'm tired. The pictures below are from Heather's Parents house where Daniel had a mini 2nd celebration. Heather's mom made Lasagna and we opened a few extra presents and packages. (Heather is amazing at making birthdays last all day. Instead of opening presents in a whirlwind as is the only way my personality will allow. Heather staggers the presents throughout the day and I know Daniel loves that.)
Just something Karen whipped up for dessert. (It was sooooo good.)
Daniel blowing out his candles.
A robe from Melissa and Nathaniel. (Daniel's cousin Austin got a robe and Daniel wanted one cause his old robe was too small. He was so happy he had to throw down his go to funny face to show his excitement.)
I try to encourage Daniel that there is more out there than being a Police Officer, like his dad, but I'm kinda worried with pictures like this that he'll get his wish. (Next birthday I'm buying him a stethoscope.)
Finally the EXPLORATORIUM!!!!!!
The Vapor Tornado
This was PJ's look after I had read like the 200th Plaque explaining what each exhibit did.
The Vapor Tornado is responsible for bringing families together across the nation.
Daniel getting his swirl on.
Daniel and Heather racing. Daniel used gravity to beat his mom. (I think there were instructions for this one about how the smaller weights go faster or something like that but the kid in me took over, and we just did it. I made it this far without directions, sorry mom. JK Daniel, now that I'm an adult I read the directions.)
Ok, so this photo needs some explanations. Its not my newest facebook profile photo. This exhibit was about how your face is not exactly symmetrical. The premise of the exhibit is take a photo and smile or make a face and then the computer would give you two right or two left sides. This was me with two rights. I think it goes without saying that God knew what he was doing with the little things like our faces not being symmetrical. My nose was already large enough and now its doubled in size. Thank God that he is God and not me.
Daniel's long lost twin.
Daniel from Outer Space
This area was called the Tinker Area or something like that. There were wooden dowels and many shapes and sizes to make a spinning top. It was a true pleasure creating with Daniel today. Watching him go through the trial and error process with the shapes or the hole location until he got it right was really fun.
The Classic Bubble Table.
This chair was a true to scale model of the one to our right in the picture. There was also one that was to scale, but on the small end of the scale just out of the frame. (For those that care about useless knowledge, the chair just to our right in the photo is actually a standard dinner table chair.)
I think this exhibit takes the cake as Daniel's favorite. This was great because when we were feeding PJ on the bench in the top right of the photo he would run back and forth. He would go over to it, turn the fan up or down, and run back. Then he would grab the ball and run to us and tell me look what I can do, and bounce it like a basketball. Then back to the fan. And on it went while the slow-flow nipple took forever to nourish PJ. Thanks Daniel for entertaining me.
Our new carrier for PJ. In crowded San Francisco where space is a precious commodity it has been nice.
Ok so the best part of the whole time was the Cow Eye Dissection. It was 10th grade biology all over again. I asked Daniel if he wanted to watch and he said yes, sat down, and was amazed.
The demonstrators cut the fat surrounding the eye, took the lens out, drained the fluid, showed us the optic nerve, a few rods and cones later and it was done. I don't know what Daniel retained, but I was thoroughly informed.
Over four hours at the Exploratorium can wear you out.
Daniel making music that only a parent could love.
Heather thanks as always for letting me share my thoughts and photos with our friends and family. I hpoe everyone enjoys. See you all next time.
Mitchell
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