Tagged by: updates

A Sunday In May

I’m a terrible daughter – I didn’t send my mom a Mother’s Day card. I didn’t really forget per se, more like ran out of time. You certainly don’t even begin to appreciate your own mom until you become one yourself. Then you not only understand the things your mom went through and did for you but you are SHOWN them. You must now do the laundry every night to keep clean clothes in the drawers, cook you own dinner and make sure there is enough food to share with the others, and pick up everywhere you go. And I mean EVERYWHERE! It’s the circle of life, I drove my mom crazy and now I am slowly going crazy but at least I recgonize that and that makes me ever so thankful for my mom and her mom and the ones before. They ultimately made me the mom I am today. My grandmother gave birth ten times, I think twice was quite enough. She raised her family with love and pride. My mom gave birth three times, once more than me and raised my brothers and I to be quite decent people. I mean none of us have any SERIOUS defects or anything. Here’s the line of great mothers that started so many years ago.

mom_baby
My mom as a baby

Me before car seats were the law
Me before car seats were the law

The Z and Grandma
The Z and Grandma

Me and the CaseyJ
Me and the CaseyJ

So to all you moms and mother figures out there (aunts, grandmas, etc) I hope you had a great Mother’s Day and a wonderful weekend!

I'm a terrible daughter - I didn't send my mom a Mother's Day card. I didn't really forget per se, more like ran out of...

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Humble but Blessed

Today was CaseyJ’s 6 month check-up for his hips with the orthopedic in Austin. I am constantly amazed by the technology throughout the Dell Children’s Campus, we noticed high-end wireless devices, all digital x-rays, phone systems etc. It’s hard to not think your child is getting the best of care while at that facility. The drive was quite easy and we arrived early for his appointment, at check-in they placed a band on his wrist and each place we went (x-rays, etc) they checked his band each time to assure it was him.

If there is one thing both Big C and I are reminded of each time we make the trip to Austin for these follow-ups is how truly blessed we are to have children in good health. While in the waiting room a young man about 15 or 16 years old was sitting in a wheel chair with an ace bandage on his shin area, playing video games with his dad. They had called him back and as his mom wheeled him back I heard his dad making a phone call talking about how this round of chemo would only be two days long not three. I cannot begin to imagine what they are going through as parents. In the imaging waiting area an EMS brought in a boy maybe about 2 years old sitting in his car seat secured to the gurney. He had a tube in is throat to help him breath and was hooked up to some complicated machines, he had to have an EMS escort whenever he left the house. Each time is such a humbling experience, to know how truly blessed we are.

CaseyJ is a pro at the x-rays, and although he gets silly nervous he is much calmer knowing there will be no “ouchies” involved – just superhero bone pictures. The particular center we went to today has a multitude of occupations under one roof. It was a small party in the exam room – a nurse, a physical therapist, the orthopedic doctor, and for a brief moment a social worker (I think he is there to help families who are caught off guard by a diagnosis, etc).

GOOD NEWS – no significant changes in the x-rays, recent complaints of lower leg pain were attributed to growing pains. And let me tell you, this kid is eating like never before so he must be growing!! Still sticking with the Meyers Dysplasia diagnosis, his symptoms still don’t tend to arthritis or anything else, follow-up in 8 to 12 months and keep a journal noting pain, limping, time of day symptoms occur, if advil given etc… for the next time we see them.

On the way back to San Marcos the little guy was so hungry he couldn’t wait to get to the shop to eat so I passed back his cheeseburger with “sausage, cheese, and plain” so that he could eat it NOW… 🙂 I am more thankful than you can imagine for my healthy children…

Today was CaseyJ's 6 month check-up for his hips with the orthopedic in Austin. I am constantly amazed by the technology...

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One Less “What’s Up Doc?”

What’s up Doc?This morning was Casey J’s follow up with the rheumatologist in Austin. After dropping Zach off at school and a quick stop at the shop we headed north bound to the Dell Children’s Hospital Specially Pediatrics. Wow, that’s a mouthful. We did finally find out that they had located his last round of blood work and while it was still elevated, not near as much as the previous one and Dr. Carrasco said it was within the limit. He handed us a stack of paper work with all the lab results and went over them with us one by one (sort of). All the markers for any arthritis work were well within their limits, the LDH which was quite high on the first draw in July is a test that measures a certain chemical given off by muscles when there is swelling in them. We have connected the time when he was limping and complaining quite a bit to the exact same time he had that blood work done. The last set he had done the limping was almost gone and the LDH had come down.

All his other tests for white blood cells, etc were normal. He did mention that some of his iron levels were low so he either needed to eat a lot more red meat of take a vitamin with D and Iron in it, being as picky as he is I will be finding the little guy some yummy vitamins. The MRI confirms the Meyers Dysplasia and the reason they want to watch it is to be sure it doesn’t develop into Legg-Calve-Perthes which is the much more serious hip disease. The boys have their four and five year check-ups Monday morning and Casey John will be done with doctors appointments for awhile! Yeah! I have a folder full of all his paper work to hang until such a time we don’t need it anymore. We will just keep hoping he gets strong and outgrows it all!

This morning was Casey J's follow up with the rheumatologist in Austin. After dropping Zach off at school and a quick st...

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Lifted Weight

This morning we had an upset boy who didn’t want to talk about anything but Legos. I got him on my lap to ask him why he so upset and he wanted to know if the doctor that he had to go to this morning was a “pokie doctor”, I told him no pokies and then he asked “no medicine either mommy?” After I convinced him it was not a pokie or a medicine doctor, and that it was a talking doctor only he was able to relax a little. Zach rode with his Grandpa to work this morning where is Aunt MaeMae met them and took him to the park. Casey, Casey John, and I headed up to Austin for his follow up with the orthopedic doctor.

He showed us his MRI results and basically they point to what the originally thought he had Meyers Dysplasia (this description really seems to fit especially the part about symptoms presenting at age 2, that’s how old he was) or Legg-Calve-Perthes, but he said he is really to young for it to be Perthes. The MRI shows some dark spots in his hip bones which is where the blood vessels are not getting the blood they need and he had a bit of fluid on his hips (but he marked there was no need to worry about that) and they are fairly well formed. We worry here about the roundness of the hips and them forming completely, he actually has this in boths hips, one just more than the other.

Today and yesterday he has really limped more than in the past few months, when he does show the symptoms we are supposed to limit his pounding activities (take him swimming or let him ride his bicycle tricycle) and give ibuprofen if needed. The next steps if the symptoms are persistent it to put him in a brace or traction. Our next follow up with the orthopedic will be at the Dell Children’s Hospital Specialty Care Center so that if that is what he needs to do in February he can do it there.

As far as the blood work goes that is still under the direction of the rheumatologist Dr. Carrasco, we have that redone next Tuesday morning and will probably have the results by the end of next week. Monday afternoon he has his appointment with the eye doctor and then two weeks after that his follow up with Dr. Carrasco. I used the color pink in my calendar for all his appointments and there are so many it looks like Barbie took over my calendar! I think we’ll have a bigger sigh of relief when the blood work is done and comes back ok! I leave you with a different shade of color tonight – yellow!

Yellow SpongeBoys
Casey J picked these PJ’s out for him and his brother!

This morning we had an upset boy who didn't want to talk about anything but Legos. I got him on my lap to ask him why he...

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Pit of my Stomach

You know that feeling you get in your stomach when you are apprehensive or nervous about something? That’s the pit I have in my stomach right now, and no I’m not hungry, well I may be it is lunch time. The new doctors barrage of tests results have come back, whatever showed up on his MRI has us going back to the orthopedic doctor next Tuesday morning. His last bit of blood work came back this afternoon and one was elevated (don’t ask the medical details I didn’t get any) but he has to have that lab work repeated in one month and if it comes back elevated again with have to undergo a Bone Density Scan again. They asked us to try and limit his physical activity – no running or strenuous exercise – but understood that may be difficult being that he is a four year old little boy (not to mention belongs at the zoo in with the monkeys). So we will wait until Tuesday morning for more information and I’ll pass it along to everyone. Thanks for the prayers.

You know that feeling you get in your stomach when you are apprehensive or nervous about something? That's the pit I hav...

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My Drunken Son

Catchy title eh? Well just to start off Casey John is nearly back to his old self. Yesterday we woke him up at about a quarter to seven, got him dressed and ready to go. He grabbed his little puppy and kitty and we were off. I had loaded two dvd’s a book and a couple star wars guys into a backpack Thursday night, so we were out the door a bit after seven. We arrived at the Specially Pediatric center right around eight and I filled out the ten more pages of paperwork including two pages assuring them neither Casey or I had any metal plates located anywhere in our bodies.

Chris called Casey John’s name right around 8:15 and we were escorted back to the sedation room. They are little hospital like rooms with a rocking chair, bed, a basket of books and some toys, heart monitor, and a TV with DVD player. Chris (he was the paramedic that was with Casey John the whole time) explained all the procedures and medicines. We were surprised to find out the sedation would be oral medicine he had to swallow and they wouldn’t do the IV until after he was asleep. Then Chris also said it would be easy to redo his blood work then so we wouldn’t have to re-schedule that!

The medicine was in a syringe and looked a bit like Orange Crush soda and the smaller syringe was clear but smelled like grape. Apparently the orange stuff didn’t taste as good as it looked, half way through Casey J decided he’d had enough and sealed his little lips tight as a drum. Poor Chris couldn’t get him to open back up, he said most kiddos cry and when they do he’ll put the syringe between their teeth but Casey J fussed with his mouth glued shut! Finally we got him to finish them both and normally it takes 20-30 minutes to set in, but not for Casey John. About 30 minutes later he was beginning to look sleepy and soon after he did fall asleep, thinking he was out Chris came to go ahead and start the IV but when he did Casey J completely woke up again.

Then it began, he first tried to take off his little gown then he rolled around the bed (a lot) and was up and down and all around. We were assured it was all totally normal, the medicine makes them feel basically like they have a terrible hang over, but we could not get him to calm down and go back to sleep. Next technique was to use a warm blanket to swaddle him and maybe that would help him go to sleep. Nope, I laid with him holding him and the crying began “I want to go home, I already took a nap, I’m not tired” , Casey tried too but still the same. He needed to go to sleep because every 30 minutes that passed the time slot for the MRI went to someone else, Chris said last thing to try was for him to stay in the room and for us to go next door, sometimes a stranger in the room helps them go to sleep. Boy was he wrong, we could hear him cry to go home, cry for mommy, Chris was trying to convince him if he took that nap he’d get some juice and a snack (remember he couldn’t eat or drink anything that morning) and so on. Finally Chris called Casey into the room and I heard him go talk to the radiologist about another dose of meds. Finally the room became quiet right as Chris was coming back with more medicine and I look in the room and I see a very passed out boy in his daddy’s arms. Thank goodness!

Casey then carried him to the MRI room while I put our bag in a locker. After putting him on the table, they put more lidocane on his arms (to numb for the IV) they put earplugs in his ears and taped cotton over the outside, place the little tube on his nose for oxygen and taped his feet together to position his hips right, placed big headphones on him, covered him up then in the tube he went. They then handed us ear plugs and we sat right against the wall about 15 feet away from the MRI. I was amazed at how loud it was when the magnetron (yes that’s what it is) started it’s job. Casey J was so asleep he didn’t move at all and he looked a bit like a helicopter pilot with the headset on. I wish I had a camera but you can’t wear watches or have credit cards or anything like that in the room because of the intense magnets, the door even has a type of shield along it at the entrance to the room.

The first part of the scan took about 25 minutes or so (seemed like forever) and Chris monitored his heart rate etc the whole time. Then they pulled him out and went to do the IV for the dye and he didn’t completely wake up but he fought it in his sleep, arms bending and legs flailing, but Chris did get the blood drawn. However the dye didn’t go in because he fought so hard the plastic needle part of the dye syringe was bent all to heck. So we waited for him to go back to sleep, when he did they easily got the butterfly needle in and the dye too. Connect him all back up (he kicked and ripped all the leads etc off when he fought the first IV) and then back into the tube for about 15 more minutes and he was all done.

Back into the sedation room for him to wake up, which usually took about 20 minutes. We figured since it was hard to get him to sleep, waking up might take a bit longer. He was really asleep, the sawing a log kind of asleep. He looked so sweet in the little rocket ship gown they had given him.

Casey J Sound Asleep (MRI 8-07)

Chris brought us a cold wash cloth to help wake him up and finally we got him to open his eyes and to sit with his daddy in the rocking chair. From there ensued the slight laughter at the apparent drunkenness of our son. His eyes were glazed, his coordination so off he could barely hold his head up and his speech was so slurred it took me a few times to understand “I want a drink”. That’s when I took the next photos somewhere between the request for a drink and him sitting on Casey’s lap.

Casey J Trying to wake up (MRI 8-07)
Right after he woke up

Casey J Head Bobbing (MRI 8-07)
Having trouble with his head

Casey J I see TV (MRI 8-07)
Focusing on the movie on the TV and getting better

After he woke up a little more Chris brought him some Goldfish crackers and juice, he had to hold them down before we could go. The hand to mouth coordination was a bit (ok a lot off) and we chuckled a bit watching him tough it out. He did great and we got his discharge papers and were on our way out. Chris said he’d be clumsy probably for the rest of the day and tired too. We didn’t bother with his shoes and just carried him out. He said he was hungry so we stopped to feed him and he ate great but it was like he was on auto pilot and I had to hold his upper body still for him so he didn’t hit his head and also help him with his juice. He fell asleep shortly before we got out of Austin around 1 pm and slept in our bed at home until 4:30pm.

He was a bit groggy when he woke up and spilled his cheerios a few times but quickly recovered and was playing by the end of the night. He did however fall asleep pretty fast when he went to bed. He’s a bit quiet today but that’s not too out of the normal for the resilient little guy. He’s the bravest 3 (almost 4 year old) I know. Both Casey and I reflected that it must be emotionally draining for parents who have really sick little kiddos and are doing that on a weekly basis, what strong people they must be. Test results as soon as we know…

Catchy title eh? Well just to start off Casey John is nearly back to his old self. Yesterday we woke him up at about a q...

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