Just a warning...this blog is HUGE! Yes, I know, I haven't blogged in FOREVER! Honestly, this summer has gotten away from me! I can't believe that in just a few short days, my baby will be an official kindergartener. I really don't know how I will be on that day. I am just hoping to make it to the car so I don't embarass Daniel with my emotional outbursts! ha! I am going to try and control myself. There is no promising though. BOO! Ok, let's not dwell on that thought for now. I would like to live in denial for the time being. :)
This summer has been a long, yet short one. It's been hard because we haven't been able to do the normal "summer" activities we've been used to because of PJ's medications. One of the side-effects of one of his medications is over-heating and dehydration. It's been difficult because we have been trying to train PJ to take a sippy cup to be taking in more liquids, but he still hasn't taken to it, so we give him water through a straw for now. But, it isn't enough to keep him hydrated in the heat and cool enough to let him be outside for long periods of time. We did make it the pool once, but the heat has just been unbearable for PJ, so we have been creative with inside activities. We've tie-dyed shirts, played countless board games, watched movies, read, colored...you name it, we've done it! It's been a blessing though because Daniel and I have had a lot of quality time together that I will cherish, especially this coming year. Daniel is my buddy and I am so thankful for our time that we've shared this summer together.
We've recently returned to San Francisco to get an ultrasound of PJ's head and kidneys as well as an x-ray of his hip. This was such a heavy, stressful trip because we were meeting with the nuerosurgeon personally so we could decide whether PJ would be getting a shunt. Just to remind you all, 80-90% of kids with Spina Bifida develop hydrocephalus so sever that that they need a shunt. It's almost a given with this disease. Along with that huge percentage of children, they usually get them shortly after birth or w/in the first 6 months. I held on to the fact that PJ is 10 months!!! 10 months and no shunt so far! Also, he wasn't showing any signs of severe hydro (vomitting, lethargy, sunset-eyes, bulging soft-spot, rapidly growing head circumference). The only symptom that PJ has shown so far is having a big head...but have you seen him?!! We have a big boy on our hands!! haha. This trip was a stressful one because PJ's shunt surgery was already scheduled for the following day after our appt with the surgeon, we had already had the consultation for pre-op, etc, so we were definitely hopeful, but trying to be realistic as well. When the dr. came in the office to meet with us, he had WONDERFUL news for us! He said that the ultrasound showed NO CHANGE since March! That is amazing news!!!! The dr. told us that so far, no shunt! PRAISE GOD! PJ isn't totally out of the woods yet, but the longer we go w/o one, his odds just get better and better! In a couple months, we will go back again and this time instead of an ultrasound, PJ will be getting a sedated rapid sequence MRI that will look at his ventricles since his soft spot will be closed and we can no longer get the ultrasounds. The whole trip and months leading up to this appt I kept praying that no matter what happened God will be praised. I was praying for strength and comfort that if we got the news we didn't want, that we knew God was in control and He knows what is best for PJ. Shunt or no shunt, God is in control and we will continue to trust in Him and rest in His plans for our PJ.
The x-ray of his hip was great as well! His hip is still in socket and the joint is molding PJ's socket beautifully and it is going as planned from the dr. The dr. told us that PJ can be out of his brace eventually all day (gradually getting there!) and only needing to wear it at naps and bedtime. YES! This summer has definitely been dificult in finding ways to keep PJ happy and content while wearing the huge brace. We mananged, but we are ever-so-thankful to be out of that during the day!! And let me tell you, PJ is loving it as well!! He sat in the high chair for the first time ever the other day and he just about burst!! He would be in there all day if I let him!!! Things people take for granted, like being able to put your child in a high chair, have been such milestones for us! We are so thankful!!
God continues to show us His faithfulness and love for us. There have been times where we have been frustrated, disappointed, hopeless, and weary, but God has continued to show us, through His word, through the love and generosity of others, that He will NEVER leave us or forsake us! Just when we get to a certain point of uncertainty, God brings someone or something into our lives to show us His control and love for us. We have never questioned God's love for us, but, being human, we have times of sadness and worry, but God continues to show us that He is our Father and He is our source of comfort, hope, strength, encouragement, and provision. I could go on and on and on!!! All I can say is, GOD IS SO GOOD!!!
Well, there are a lot of pictures below and I'll just let them do the talking about our summer. Hope you enjoy...and sorry for the long blog!! LOVE YOU ALL!
PJ in his highchair for the first time!!!
Mitch and Daniel sleep in the backyard every summer at least once, and here is Daniel helping Daddy get tent ready!
My parent's got PJ and Daniel Cub's hats when they were in Chicago (don't worry Hinton Fam, we are Twins' fans all the way!) and PJ wasn't too happy about modeling the hat!
Daniel and PJ!! PJ claimed the corner of the couch to be able to sit up and play while in the brace.
How handsome is my boy?!! Why can't he be 5 forever?!
Never a dull moment!
Happy as a clam!
Daniel at his last day of swimming lessons!
Proud of getting his certificate of completing lessons!
Diving for treasures!
Once again, in the corner of the couch and loving it!
We took a day-trip to Hinkey Summit and Daniel was being a dare-devil and crossing the creek all by himself!
Country roads!
Relaxing!!
Daniel was fishing with sour gummy worms, inventive, but I don't think he caught anything ;)
Making icecream with Pappy on the 4th of July!
Waiting for fireworks!
Not the couch, but still the corner of something! ha!
Mitch said that Daniel looked like a future politician here...what do you think?
BROTHERS!
1 comment:
Praise The Lord!! As always, I think about you guys a lot and you're in our prayers always! Praying also for Daniel as he starts school and for you momma! Brings tears to my eyes just thinking of you having to let Daniel go. Thankful I have another 3 years. Alright, love you guys lots!
Amber
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