Happy Halloween Everyone!!!
Happy Halloween 2009
Category: Trish’s Posts
Multi-tasking Mishap
For all you new trach moms out there, I recommend you not multi-task when boiling your child’s trach for the purpose of sanitizing it. 🙂 We change Rudy’s trach and replace it with a fresh, clean one each week. I clean and boil the dirty trach and then once it’s dry, I pack it away for the next trach change. Well, this past weekend I put Rudy’s trach on the stove while I prepared for dinner guests and tended to Rudy’s dirty diaper. Max came in a bit later and said with a turned up nose “What’s that smell?”. Somewhat irritated that Max was turning up his nose at the dinner I was preparing, I quickly responded “that’s mommy’s yummy potatoes, Maaaax!”. Again with the turned up nose he looked at me quizically and walked away when I turned and noticed the smoke coming from the stove top! Yikes!!! No wonder Max had a turned up nose…it smelled awful! Rudy’s trach looked like a over-toasted marshmallow and my pan was ruined… More annoying than losing one of my most-used cooking pans is the fact that I have to track down another Shiley 4.0 Neo trach from our medical supply company (Apria…affectionately known in our household as “crApria”) which will inevitably involve more than one prescription faxed from our doctor’s office and several follow-up calls for which I have very little patience. Oh well, we had fun with our dinner guests nonetheless and my potatoes turned out pretty good too.
We just haven’t had the heart to post at all since Logan’s funeral last week…in part because we’re tired, a little depressed and because the momentum we felt in Rudy’s treatment plan a couple of weeks ago feels like it has stalled a bit. Some days it is really easy to wait for the Glenn especially because we are home and enjoying our fall together under one roof but then other days (like today) the wait is truly nerve-wracking! (sigh)
We were relieved to get a call from the pediatrician’s office yesterday informing us that the H1N1 vaccination was in after a long delay. I was instructed to come in with Rudy right away and to check in without mentioning why we were there. Like everywhere else, our county received a very limited amount of vaccination doses…clearly not enough to go around…so going to get Rudy’s vaccination felt a bit like an undercover covert operation but we are grateful he made the cut. Originally, Rudy’s doctor wanted all of us to get it as an added barrier of protection for Rudy but that isn’t possible at this point and after a call to the bigger kids’ doctor yesterday, it seems they’ve run out of the regular flu shot too so we trust the big kids will be their typical healthy selves this season and stay clear of any major bugs on their own!!
While I had Rudy in the doctor’s office yesterday, I put him on the scale and he weighed in at 19 lbs 8 oz! Rudy has outgrown formula and we started him on Pediasure two weeks ago which is high in calories. The increase in calories seems to be helping him gain weight. It’s still a delicate balance as an increase in volume can be problematic for his heart but because Rudy seems to be tolerating the higher caloric content of Pediasure, we can get him more calories in the same amount of volume. The switch to Pediasure distracted us from making any headway with baby food…Rudy’s pretty uninterested in taking food from a spoon but we’ll start back up with our attempts now that he has transitioned to the yummy, vanilla pediasure shakes. So, we move ever-so-slowly forward (but forward nonetheless) in the world of food and weight gain.
Lastly, Rudy had his annual assessment from Early Start Services this week that is overseeing his developmental progress. Their assessment is broken down into 6 categories: Fine Motor and Perceptual Skills, Cognitive, Language, Social/Emotional, Self-Care/Feeding and Gross Motor. Overall, Rudy is beginning to register in 5 out of the 6 categories at the 6-8 month age level and in 2 of the 6 categories at the 9-11 month age level. As much as we would love to see him sitting on his own and becoming mobile, we are grateful for his progress and know these skills will emerge in time. If they had a category for “smiles”, Rudy’s would register far beyond his years.
Holding Our Breath
We continue to mourn the loss of CTICU friend Logan and anticipate a beautiful celebration of his life this Thursday. Rayme and Brett have shown such courage and vulnerability during this tremendously difficult time. I know they appreciate our ongoing prayers.
It has been hard to know how to celebrate Rudy’s progress this week…we were pleased to find out at Friday’s well-child visit that Rudy finally registers on the growth chart. At 18 lbs 8 oz and 28 inches long he ranks in the 3rd percentile for weight and the 5th percentile for height. Dr. Abbott (pediatrician) is happy with Rudy’s general condition and feels he doesn’t need to see Rudy again for 3 months…unless he gets sick. Rudy is on the priority list for the H1N1 vaccination but the shipment is late in arriving to our Dr’s office so we wait…and are going through gallons of hand sanitizer in the meantime.
I admit that the confidence we’ve felt in Rudy’s progress the past few weeks has been challenged in the wake of Logan’s sudden death. The big exhale I felt after the pulmonologist’s report has shifted to holding my breath again. The Elliott’s loss is a brutal reminder that we can’t protect these little ones from everything…for Logan, a virus turned deadly…as hard as we try to control Rudy’s environment for his protection, ultimately he is in God’s hands…just as he was in the hospital.
I’m not even going to try to figure this one out…just please pray that God will shower Brett, Rayme and their family with comfort and direction as they wade (or maybe it feels more like “drudge”) through their grief. No matter how you slice it, it’s heavy! Thank you dear friends…
This Is A Tough One…
Just minutes after posting our gallery of goofy portraits earlier today, Rolf and I got the devastating news that Rudy’s CTICU buddy, Logan, passed away suddenly this morning (Wednesday, October 14th). For our longtime Rudy’s Beat readers, you may remember that Logan arrived in the CTICU just a few days after Rudy…flown in from Santa Barbara at 2months of age when his serious heart condition was detected at a routine well-child visit. Because of the SB connection, we bonded with Logan and his parents, Rayme and Brett, quickly. Although Rudy and Logan did not have the same condition, they did have many of the same complications after their surgeries and for awhile it seemed we were walking parallel paths. Logan’s struggle was fierce and intense but he survived and began to show major improvement which encouraged us as we waited for Rudy’s “turning point”. For eight weeks, we shared life and created community with the Elliotts in the CTICU and rejoiced with them when Logan was discharged at the end of November ’08. I watched Rayme make that tough transition to home after a long hospital stay and when our turn finally came to bring Rudy home, Rayme’s texts and blog comments were of great comfort and encouragement because I knew she had just been through it herself. I ran into Brett and Logan at our cardiologist’s office shortly after we brought Rudy home from UCLA in May. He looked so great and strong and happy. Because he was doing so well (as the above picture would suggest), today’s news came completely out of left field. It literally knocked the wind out of me and I immediately began to sob for Rayme and Brett and their families. Please join us in praying for this precious family…for Brett, Rayme and big sisters Kaelee and Emma. No one saw this coming and, as you can imagine, they need our prayers for grace, comfort, strength and faith as they face this tragic loss. The losses along the way have been hard but this one is tough…hitting very close to home for me and Rolf. Please blanket these dear ones in prayer.
1st Studio Portrait!
This week is marked by Rudy’s first trip to the Sears Portrait Studio. Although we have a number of gorgeous pictures of Rudy thanks to Greg Lawler and his artistic eye, we really needed a cheezy portrait studio pic in celebration of his 1st birthday to complete the cheezy portrait studio collection we have in our hallway gallery of all the kids. Rudy was a cooperative model and the photographer and I did all kinds of creative “tricks” to get the desired poses…as always, Rudy put up with Mommy’s shinanagins and this is what resulted…
A walk down memory lane…here is the family gallery of 12-month portraits…
Here’s to many more “cheezy portrait” seasons ahead!
Rudy At Play
We saw Dr. Harake yesterday (SB Cardiologist) and he was pleased with the Pulmonologist’s report from Tuesday. Rudy’s echo looked sound as well so this has been a good week for our little man. Dr. Harake still feels we have some time before the Glenn…we get the impression from the UCLA team that they would like to move forward so, at this point, we’re going to let all parties discuss the situation and come up with a plan. As much as we would love to get the Glenn over with, we trust the professionals to come up with a plan best for Rudy.
In the midst of all the doctor appointments this week, we did have time to catch Rudy on video doing what he does best…being cute…
Rudy’s therapist wants Rudy sitting up more and, thankfully, he is tolerating it more and more…it used to be that he couldn’t sit up more than a few minutes but this week he sat comfortably for 15 minutes!!! Rudy enjoyed some “sibling therapy” while practicing sitting up earlier this week…
And then my two hams wanted to teach Rudy one of our old family favorites…
Later that day, Wilson had time to love on the big “sittin’ up” boy…
As always, one day at a time…
Where Are We Now?
It is the eve before Rudy’s 1st birthday and the memories of this time last year are both a big blur and so vivid. It feels like de ja vu as, like last year, we are busily preparing for the Rescue Mission’s annual fundraiser that is happening this Saturday. Rudy came just 3 days before the Bayou last year and I think we must have sent a few folks into a bit of a panic when news spread that we were at UCLA but it all worked out wonderfully…Rolf and I were able to make it back for the event after Rudy was safely settled in the CTICU and before his heart surgery the following Monday and I remember it being such an encouragement to be in the company of so many dear friends in the midst of our whirlwind start to our journey with Rudy.
Here we are a year later and I can’t help but remember the times in the CTICU when we were naive but also intuitive enough to know that the concerned look on the docs’ faces wasn’t a good sign…or the call I got from Dr. Marie when she told me they had to do CPR on Rudy and I RAN back to the hospital with tears streaming down my face terrified of what I’d find when I got there…or the week in December after several surgical procedures in a row when Rudy’s hair fell out and he looked like he had had ENOUGH! So many memories both hard and wonderful and tomorrow we add to the wonderful memories.
I’m not sure what I thought life would look like at this point but I do feel like we’re doing better than one would expect. I’ve been asked lately how we’re doing and I’d have to say we’re doing well. We are managing the essentials of home and family…our lawn may be dead, but our sheets are clean…our photos aren’t making it into the albums but homework is getting done and turned in on time. I think the most noticeable longterm side effect is our lack of energy…life feels pretty balanced when we are engaged in the normal routine but when something changes, is added to it or we are faced with a minor annoyance, Rolf and I notice the lack of reserve. This isn’t to say we don’t have our bad days or aren’t preoccupied by the stress of work, money, Rudy’s upcoming surgery, kid concerns, etc. but the big picture is blessed.
When we brought Rudy home from the hospital back in May, I remember hoping he’d be sitting up by his first birthday and, I suppose, we could obsess over all the things he’s not doing yet but the reality is he HAS come a long way. Four months ago, he was still looking predominently to his left unable to reach out and grab for objects. Now he is able to track with his eyes moving his head from side to side, he can grab his little paci toy and get it to his mouth, he is starting to roll to his side, he is kicking his legs in excitement and, of course, he is smiling more and more…that reasurring smile that absolutely brightens the room. He is even learning how to play “peek-a-boo” as demonstrated in the video below:
Bottom line: Our one-year-old is limited in ways but knows only LOVE, LOVE, LOVE and gives so much JOY, JOY, JOY. Rudy’s reality may not be perfect but it is rich. How grateful we are…
Break Out the Birthday Decorations!
Wow, it truly is hard to believe that one week from today Rudy will celebrate his 1st birthday. All those months in the hospital I didn’t allow myself to look very far into the future and since we’ve been home, life has been so full and active I haven’t had much time to think about it…but here we are – a year later and getting ready to celebrate a major milestone. We may look a little tattered and worn but our family is certainly richer for the experiences of the last year and we are deeply blessed by the joy and laughter Rudy brings to the scene.
Our “Rudy’s Beat” community of family and friends has been a big part of the blessing of this past year through your prayers and encouragement. Because you are a significant player in Rudy’s journey so far, we wanted to extend an invitation to you to take part in a “worldwide” cyber-celebration. We invite you to wear Rudy blue (aqua), do something special or creative next Thursday, October 1st in honor of Rudy’s birthday and email us a pic of you celebrating. As if that isn’t fun enough, all cyber-guests will recieve a party favor so be sure to email us your mailing address too! Ha Ha
We have a tradition in our family of sending “cousin cash” to our nieces and nephews each year on their birthday…a small gift that the birthday boy or girl can pool together and get something they really want. For those who feel so inclined, in lieu of sending Rudy a gift, we’d like to invite you to send a small “cousin cash” donation to www.kissesfromkatie.org in his honor. Katie Manning, along with her parents, was and continues to be a source of inspiration to us and we would be blessed to see the very practical help her parents are providing to ICU kids and their families through their organization supported.
Locally, we’ve decided to keep things LOW KEY but if you happen to be in the Santa Barbara area, please join us at the McDonald’s on Fairview Ave. (ocean side off the 101 – and not just ANY McDonald’s, this is the birthplace of the Egg McMuffin! So, for those of you who don’t do fast food – Kelly- it’s kind of like going to a museum!) for a hot fudge sundae…we’ll be there Thursday evening from 6:30-8:00pm on the patio! Ha Ha
Okay, gang, get creative and LET’S PARTY!!!!
Too much living for words…
Since school started, the pace at home has picked up and time is FLYING by. There are so many new experiences for Rudy about which we’ve wanted to post but they are happening so fast and a big snowball is starting to form…rather than go into lengthy descriptions of all the fun, I’ll let the following pics speak for themselves.
Let The Party Planning Begin!
When Rudy last saw the Docs at UCLA in early June, the hope was to push the Glenn back to late September or early October putting us back in the hospital around Rudy’s 1st birthday. Well, after today’s appointment with Rudy’s SB cardiologist, it looks like we get to hold off and push it back even more which means we can party at home on October 1st!!! Yippy!!!
As much as I would love to have a general timeframe for the next heart surgery so I can begin planning for the family’s needs during Rudy’s next hospital stay, the fact that we get to wait another month to answer this question is a good thing for Rudy. Strong lung function is important to the success of the Glenn procedure where the superior vena cava is ligated (or cut) from the heart and connected directly to the pulmonary artery. The “blue” blood then goes directly to the lungs instead of through the heart. Given Rudy’s chronic lung disease issues, the more time his lungs have to grow and strengthen, the better! In layman’s terms, it is risky right now to do the Glenn procedure on Rudy but there will come a time in the not so distant future when the risk will lie in NOT doing the procedure. We’ll know this shift has occured when Rudy’s oxygen sats lower and remain low even when he is on oxygen. Our next scheduled appointment with Dr. Harake (SB Cardiologist) is October 9th…if things remain the same for Rudy, we’ll plan another 4-week appointment and so on until his condition changes and surgery is finally on the table (no pun intended).
The “not knowing when” is driving me crazy but it is clear that the best approach to managing all the intricate unknowns of the next few months is to not attempt to manage it at all and take it ONE DAY AT A TIME…why do I have to CONSTANTLY remind myself to do this? Correction…I’M driving me crazy!!!! 🙂
Most importantly, at 17 pounds and 27 inches, Rudy is doing well today and we pray for his lungs to heal and his body to continue to grow preparing a healthy foundation on which to take the next step in this HLHS journey. Thank you for your continued prayers as we all wait together!
Rudy's Beat 