We end this beautiful Easter Sunday with the three older chicks nestled in their beds and the littlest chick nestled on Daddy’s lap.  We celebrate our Risen Lord today so thankful for the presence of hope in our lives because of His sacrifice…

We had a good weekend.  Rolf and the boys gave some much-needed attention to our yard yesterday afternoon and it felt good to get some chores done that are long past due.  Rolf and the kids went to an outdoor Easter service this morning while Rudy and I celebrated at home.  We enjoyed a low-key afternoon and our first grilled steak dinner of the season with a good friend this evening.  Rolf loved being home on a weekend for a change and I love that I’m not scurrying around this evening getting my bags packed for another week at the hospital.  Rudy is doing well…no fever since Friday and very calm when his tummy is full and his diaper is dry…we’ve experienced a good dose of “normal” this weekend and it does the soul good.  Wilson gave his first bottle to Rudy,  Max changed his first diaper and Olivia is quick to supply Rudy with many kisses so eventhough we’re all challenged at times with the many adjustments we’re making, love for Rudy by all is quite evident.  ‘Wishing you love and peace this evening!  Happy Easter…

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

We started Good Friday with some early morning playtime before the older kids headed off to school.  Rudy was sure mesmerized by his older brothers.  All in all we had a good day although we did have a bit of a scare early this afternoon.  Feeling a little “house rot” today, Rolf and I ran a couple of errands together and when I lifted Rudy out of his car seat when we returned home, he didn’t look right to me.  His eyes were somewhat rolled back and he was very labored in his breathing.  We got him inside and suctioned him…when that didn’t work, we changed out his trach and suctioned him again…that didn’t help either so I took him to the pediatrician right away while Rolf waited for the others to get home from school.  I was pretty nervous driving over to the drs office and wondered if the better call would be to go straight to the ER…I wasn’t sure.  He was working hard to breathe but wasn’t blue so I stuck to the plan to get to Dr. Abbott’s.  His office was expecting us and got us into a room right away.  I felt a little ridiculous as I burst into tears when his nurse came in to check his temperature.  She was sweet to reassure me that he was going to be okay…Dr. Abbott came in shortly after and checked him out thoroughly.  As is the norm with Rudy, it wasn’t clear what was wrong.   His oxygen sats were good, for Rudy, and there didn’t appear to be any kind of obstruction in his airway.  He did, however, have a decent fever so we gave him Tylenol and a cold compress treatment and waited…Rudy started to calm down about 20 minutes later.  At that point, he was an hour late for his methadone dose and a feeding so it was hard to know if he was struggling or just agitated.  There wasn’t an obvious reason for the fever so the plan is to watch him closely over the weekend and if another fever spikes causing respiratory concerns, we’ll need to go to the ER here in town.  I asked Dr. Abbott if we were right to come in or if we overreacted and he said, “No, you were right to come in.  I was very concerned about how he looked when I saw him initially but he’s a different little boy now”.  I don’t know if I’ll ever get used to the sudden twists in Rudy’s condition but that is part of “life with Rudy”, I guess.  Rudy has been sleeping soundly since we got back home…he is tuckered out!  ‘Praying the fever was a fluke and not the start of a bug of some kind…we sure don’t want his body to have the added stress of having to fight something off.  I’m praying for continued peace as well because I sure don’t want to “live in fear” of what may happen in the future.  Today rattled my confidence a bit but I’m hoping a good night’s sleep will cure what ails me!   🙂

Once again, it’s hard to believe another little chick is another year older!  It was a full day for Wilson with school and a good bit of homework this afternoon but we enjoyed a yummy home-cooked meal (Wilson’s request) together, a trip to Carvel ice cream for dessert (I stayed home with a sleeping Rudy), and Wilson had fun opening gifts from family and friends…he really enjoyed being remembered.  Happy Birthday Wilson…you make us so very proud!!

Rudy had another good day here at home.  We’re tickled pink we’ve made it 48 hours without having to go back to the hospital.  Both Rolf and I feared we’d end up having to go back for some reason but…so far, so good!  I mentioned earlier that he is sleeping well through the night and we certainly pray that trend continues.  He has also had fairly regular success at eating his full daytime feeds from the bottle!  In the hospital, he would down about half of his feed and then we’d have to put the rest through the feeding tube but several times since we’ve been home, Rudy his finished the entire bottle in less than 40 minutes which is his time limit…that is VERY encouraging to me.  We had our first pediatrician’s appt. today and it was comforting to have a professional look Rudy over and confirm that he is doing well.  Dr. D. Abbott spent a good bit of time with us and was very thorough going through each detail of Rudy’s discharge summary.  The bottom line is we have a number of specialists we need to make contact with in the coming weeks.  Although we have follow-up appts set with doctors down at UCLA, we are going to try to get appts set up with specialists here in town as we’ll need to establish relationships with these doctors long-term anyway.  The trick will be to get appointments set up in the next couple of weeks…if time is an issue, then we always have the UCLA appointments to fall back on.  Rudy will need a follow-up with an ENT doc for his trach, a GI doc for his g-tube, Dr. of endocrinology for his low thyroid function, Dr. of immunology because of his weakened immune system and a pediatric eye doctor for what we hope will be just a one-time visit – there is concern about Rudy’s tendancy to look toward the left and not track consistently AND, of course, he’ll have his on-going relationship with his cardiologist.  So, I’m praying we end up in good hands on all fronts as it seems there will be many of them!

Thankful for a quiet day…and thankful for you!   Thank you for all the wonderful comments on the blog and emails!  You are dear to share in our joy and celebration…