Pre-K...gulp

This has been a big week full of big steps and milestones. 

Tuesday night I had the pleasure of attending a meeting for incoming kindergarten parents. Yep…kindergarten. We got some of the scoop on dates and other things that are coming up and to consider. Holy. Smokes. (Thanks Honor for watching them!)

 Wednesday was a day for appointments. In the morning we hit the ENT for a check for Parker. His t-tubes in his ears have been in now for over 2 years. The ENT is ready for them to come out since there is no appearance of fluid and there is no concern over any type of speech delay. It is out-patient surgery to remove them and put a small patch inside his ears to make sure everything heals correctly.

 After a quick park break after the first appointment…

We headed to the pediatrician for our pre-K checkups. Here’s the latest, including everyone’s favorite – their numbers.

Parker is doing good. He passed his eye exam, and they confirmed that he has some super-sensitive hearing. Good that he can hear great, not so great when you’re a kid that deals with sensory issues. While he does have a list of diagnoses that are included on his note to school, he is cleared and there’s no reason that any of them will cause him any concern as he gets started. His g-tube site has healed wonderfully and there won’t be any need for medical intervention at this time – he’s sealed up and great. He did get his finger poked for blood and 2 shots. He is not nearly quite the stud his sister is at getting poked so it was slightly dramatic. He is a whopping 34 pounds, fully clothed and with shoes on which puts him on the at 3% on the growth chart (and gives him a BMI of 0.2%). 

Payton is doing well. She passed her eye and hearing exam with flying colors. She also has a list of growing diagnoses that will accompany her to school. She will continue to be followed by the Hematology doctors for a while. If school starts and she is still receiving drug therapy for her aplastic anemia, we will then go on exploring additional factors to take care of with the school nurses, but right now we need to wait and see what happens. She again instructed her nurses on how to poke her finger for blood. Because the vaccinations they were to get this time are live virus vaccines, and she’s still immune-suppressed, she can’t have any vaccines until she’s finished drug treatment at least 6 months. She spent her time with Dr. Woodford telling him everything he needed to know and correcting him about everything happening with her. She is 46 pounds and right in the middle of the pack for height and weight.

So they’re ready. Kindergarten Ahead and registration are in a few weeks. We’ll keep you updated!

P.S. We stopped at mom's new work so they could meet my new work friends. They were very happy. This would be the college graduating class of 2033. 

Plastic....what???

After a week or better of bruises that were in weird places and that I couldn't explain, I was met last Tuesday with teachers and nurses concerned because Payton had petechiae in random places and all over. They brought up calling the doctor to check since she isn't on any meds that would cause that and both things were new. So Wednesday morning, I did and we were in with our regular doctor by lunch time. Within 2 hours, Dr. Woodford was calling saying her bloodwork wasn't good and we needed to go to Children's Hospital. He'd already called and they were waiting for us. I picked her up and we were on the 4th floor in no time.

Fairly quickly, we were in a permanent room, had lots of blood taken and an IV placed in case they needed to run anything (that last part took an hour, 3 nurses and me). It was obvious pretty quickly that things were not good. Her hemoglobin, white blood cells and platelets were all down. By Wednesday night the plan was on that she would have a bone marrow biopsy Thursday morning. The procedure was quick and thank goodness, she tolerates anesthesia well. She took her favorite giraffe friends, Doc, with her and got a lift in the wagon.

She recovered with Aunt Bo, some lunch and a little Sleeping Beauty while I ran home to shower and change.

We spent the rest of the time just hanging out in our room. Because of tests they were running, she was technically in isolation so we spend a lot of quality time in her room. The best thing about being there was the view and watching the sun rise, which we did every morning.

 By Saturday morning, it was over. She had had enough. She wanted out. She wanted to go home. She was mad. So when the resident came in to the room and asked how it was going, I told him...."she's officially mad and pissed off and she wants to go home" (ok, I was too). Parker was reprtedly saving part of his food for her when she came home. And lets be honest, the little runt can't really afford to skip any calories.

The doctors came in with a diagnoses, a plan, and an agreement to send us home. Payton has what we're calling for now Aplastic Anemia. Bascially, her bone marrow, which should be working at 100 % making new blood cells for her, is only currently working at 10%. All her counts were still low but steady and hadn't fallen off any more. She will follow with the hematology team at Children's indefinitely, which for the foreseeable future will include twice weekly blood draws in the clinic to monitor her levels. She could go home, with some strict outlines and rules for what to watch for. We agreed, signed off and on the first football Saturday, she suited up and we were out.

She and Parker were over the moon to see each other after 3 days. The first thing they do together - pull out one of the giant tigers and proceed to be doctors to take care of him. 

We were told not to take her around lots of people, avoid big crowds, etc. Basically, if she catches something her body doesn't have what it needs to fight it off now and could be bad. So for the weekend we decided the highlight would be hitting the Labor Day Parade. Fresh air and sunshine to wonders for everyone. We even saw "Star Wars guys" and Ana from Frozen...score!

Over the few days we were there, we had lots of visitors and were beyond spoiled by people making sure we were taken care of. Thank you isn't enough to say, but it's all I have. 

The best boss in the world made sure Payton and I both had what we needed. :)

Yes, I was taken to dinner at Old Chicago and I'm that annoying person that took a picture of my food. It was good. The company was one of my favorite people. And I just wanted to. 

 Parker enjoyed a little one-on-one time with Aunt Bo and Grandma shopping at Target and pounding some chips at La Mesa. (Yes he's wearing a bow tie to dinner).

To answer some of the questions we keep getting -

We don't know exactly what's next right now. Bone marrow transplant and immune suppression therapy are both things that have been brought up, but right now, we just don't know. We're waiting for more specific results before anything is decided on. 

She's doing ok. She is a little wimpy and her appetite isn't quite normal, but she's ok. 

Is this a preemie thing? No one knows. Maybe. Not necessarily. I asked...no one can give a definitive answer. 

The links above are more explanations on what each of those things are - in case you want to know. 

We didn't have have to get platelets or transfusions yet. It doesn't mean she won't at some point. Without counting this, the twins together in their short little lives have had together 13 blood transfusions. If you've ever considered giving blood or platelets, please do. 

Yes, if you want to visit, it is ok. She loves everyone and a chance to show off (so does Parker). But please, if you are sick, wait until you're well. You may remember our days in winter lockdown....well, we're kind of back in the same type of situation. So if you come over, don't be mad if you get handed hand sanitizer :)

Yes their birthday is coming up. I'm tenatively planning a birthday party. I'm waiting just a while to see what happens and what directions we're given before we decide how to continue. 

The past week so many friends have gone above and beyond to make sure I'm ok, that she's ok and we both know we're thought of. You are all amazing and I can't even come up with words to thank you. Bags of sunshine, coffee delivery, tylenol delivery, special trips to see us, things to keep us busy, just checking on us...all of it means the world. I'm so blessed and grateful...there are no words, just lots of tears. 

Fear and love cannot inhabit the same moment. Choose love. Every time.  -Kristin Armstrong

Preschool!

We made it through our first full week of preschool...it was a huge success!

The twins are reunited with several of their friends who had moved over to the preschool room already. They are now the pack again - Payton, Parker, Kierra W., Kierra A., Elaina, and Owen.

They have been totally worn out in the evenings. They have had a blast manning their way through an obstacle course on a few days, they are making special art for the big art sale in a couple weeks, they are helping take care of their class frog (yep, it's real!), computer time, bigger and better art time and thrown in regular school library time. It's amazing. No kidding, I can already tell a difference.

Their new teachers are amazing. Their old teachers are still making small appearances. It's the best possible situation. They are having a great time and I could not ask for anything else!

Also in big news from last week...I'm crowning Payton as completely potty trained. HOO-RAY! Not one accident since she decided she was ready to stop with the pull-ups. She's waking up from naps dry. We're still using a pull-up at night just in case, but at least half the time she's waking up completely dry. So proud of her! Now if we could just get the little brother to get on board.

And speaking of Parker...he had his surgery follow-up. All is good. Everything looks fine. But...he just finished a round of antibiotics for a sinus infection. We also did steroids since somehow between surgery and sinus infection, or some combination of all these factors, he was getting pretty stridorous (squeaking when he was breating) again. He had me checking him out all the time in a mini panic. Now that the meds are done, he's good as new.

The 3 year old run down

That's right...they're 3!!! People have been asking if I can believe it. Somehow it's all gone by in a blur, and at the same time every gray hair, moment of exhaustion and day with circles under my eyes is proof I've scrambled my way through every single day. There's been a few appointments the past few weeks so let me get out the latest.

Payton - the little diva is doing just fine. Things have been pretty quiet from her since she had her surgery in July. She's doing much better and the sleep apnea she was having is gone since surgery...yay!!! She's been battling a few allergies and colds but otherwise she's doing fine. I'm a little nervous headed into RSV and flu season with her. We'll be chatting more about that when we see pulmonology next month when we follow up with them. At our 3 year checkup today and she's doing just fine. When the resident that was following Dr. Woodford around came into our room today he said "these are my miracle babies, Payton and Parker". I love that he cares about them so much. She is 29 pounds today (with clothes) and 35.5 inches. That puts her at 15% for height and 31% for weight for average 3 year olds. Her development is going just fine and all her other numbers look good. We love Dr. Woodford, but I'm hoping Payton won't see him until next year when they turn 4.

Parker - the dude! It's been an intense couple weeks with the man. The results of his latest scope were good. The medicines he's on are helping the EOE. We will follow-up with the allergist in December and are taking his oral Pulmicort once a day instead of twice.

We had our appointment with the developmental pediatrician at Children's. It took 6 months to get the appointment and I was not as excited in the end as I'd hoped. We were lucky that our Occupational Therapist for Early Intervention came with us to be another set of ears and ask questions. I didn't feel as if the doctor completely understood what I was always saying. Not that I was looking for her to say "he's autistic/has ADHD/has....". But I wanted a little more than what I got. Despite it all she did diagnose him with disruptive behavior disorder and sensory integration dysfunction. We've been referred on for more OT for sensory issues, and have a behavioral person helping brain storm ways to help Parker deal with situations that cause him to completely meltdown. He was also put on another medicine, clonidine, for being a horribly restless sleeper. I guess more to come on all this as we sort things out and move on with some new things.

Today he had his 3 year old checkup too. We talked about his news from the scope and the new recommendations for sensory OT. Dr. Woodford is also recommending return to OT and speech therapy to work on drinking since that's a particularly horrible area for him. Parker's development is just slightly behind but there's nothing to be overly concerned with right now. We'll just be keeping an eye on it. We drew blood to test for allergies. Despite having me pay on his lower half and two nurses, he wiggles enough during it they could only get a half vial and he blew a vein. Not good buddy. Since we were there 6 weeks ago when he was sick, Parker has lost 2 pounds, putting him down to just 23 (with clothes). That's alot of weight when you're that little. That puts him at just .07% for weight while he's at 35 inches and 4% for height. All his other numbers seem to be fine. Because of the weight loss we quite possibly may soon be seeing the feeding and growth clinic at children's to add to our list too.

And so in the past week I've gained a few more of those gray hairs. Now you know why when you see me.

Onward and upward...with a very large cup of something caffeinated for mom.

Check-up Time

Monday was our 2 1/2 year mark which meant a 2 1/2 year check-up with the doctor. Dr. W came in and was really proud of all the stuff they can now do and is thrilled with their progress. It was a good thing that we were there because as we sat their, Payton got a fever. All the way to 104. Yikes!

Parker went through  the routine first and was not happy. He's 24 pounds and 34.25". This puts him at just 3% for weight and 12% for height. We talked about his new diagnoses from the GI and Allergist. He said he'll jump in if we need him to, but he's going to sit back and let them take care of it since there's nothing much more he could add at this time. We also talked about changing things up because the little mans eczema is out of control right now.

When it was time to move on to Payton, who was besides herself because she didn't feel good, Parker went to hang out at the front desk. He sat with Cami, had a sucker, colored a little and flirted with everyone. This was a huge help because I had them by myself which is not easy or always fun, especially when they're sick.  Thanks ladies for your help!

Payton checks out ok. She's 29 pounds and 34.5". This puts her at 57% for weight and 24% for height. And especially cute now that she's all filled out. With her super high fever she wasn't breathing all the good and her and I went ot have a chest x-ray while we were there. Dr. W was getting a look to see if something might be brewing so we didnt' have to take a trip to the ER later. The radiologist even called Dr. W before we even left the office with his read on them. Awesome!

We spent the rest of Monday and Tuesday at home recouping from a bunch of flu symptoms. We're getting a little better all week long so I'm hoping it will be gone and done by the weekend so we can do some more outside play time.

Eye rolls and hoorays...

The past week has been full of eye rolls and a few hoorays from me here. It's not anyones fault or something anyone has done, it's just life.

The babies have been sick. We've seen the pediatrician 3 times in the past week (eye roll), and three sets of med changes from him (eye roll). Payton and I had an emergency room trip Friday night (eye roll). While there we had a few people who weren't listening (eye roll) and some that did(hooray). We ended up being admitted at 1:00 a.m. and spend 10 hours there (eye roll) before being released (hooray). I've been doing round the clock breathing treatments including setting my alarms for 2 a.m. to to oxygen sat checks and treatments (eye roll). Luckily at this point, they mostly sleep through those (hooray). And between oral steroids and breathing treatments round the clock with steroids in them, we are sleeping less than our normal not so great (eye roll). Ever seen a toddler who's exhausted, starving but refusing to eat and hopped up on steroids? It's not pretty.

But the this week started off a little better (hooray). We went for our first bite of Christy Creme ice cream Monday afternoon. While we were there, Payton had her first embarrassing moment. You know this song...

 

We sing a modified version "Shake Your Baby" during bath time when we're getting out of the tub and both babies do a little dance and shake off and get wrapped up in their towels. While we were sitting with our ice cream, Payton looks at me and really loudly says "shake a baby" and starts to giggle. The lady in the booth behind us turned around and glared at me. I've been waiting for CPS to show up at the house ever since. 

 And here's a little bath time fun for a mid-week smile. Happy Wednesday!

Eating, sleeping, and pooping

These are known as the things babies are famous for...or things that we have updates on. So grab a drink and here we go.

Eating - we finally had our meeting with the allergist about all Parker's procedures in November. He has eosinophilic esophagitis (EOS). These are the same type of cells that cause people to have asthma or hay-fever, but Parker has them in his esophagus. We've been put on two different medicines - one to spark more appetite hopefully, and an anti-reflux med - and then he'll be scoped and biopsied again in February to see the results. They are trying to determine which type of EOS he has to determine the next course of treatment for this. EOS in his esophagus can make it uncomfortable to swallow or irritated by any reflux symptoms.

Sleeping - This momma got some sleep! For Christmas, Chris gave me a gift certificate to have the night off and get a hotel room by myself. I also got gift certificates to get dinner while I was gone, and coffee on the way home. So last Friday, I went straight to my hotel room from work. I ate dinner in my jammies while it was still hot in one sitting without having to share with anyone. I watched crappy t.v. I slept. Since the kiddos still have yet to make it through the night all the way through without waking through the night, I hadn't had an uniterrupted nights sleep in 2 years, 3 months, and 13 days. It was fantastic! 

Pooping - Payton has suddenly started having some major problems. Major. This has all come on out of nowhere with no real explanation. We had to go check in with the doctor this morning. We had a physical examination by the med student and the pediatrician, then were sent on to rule anything out. A blood draw and quick x-ray ruled out anything awful so now we have a few new tricks to try. Hopefully we can avoid anymore screaming and horrible episodes. 

Half way through another week...one week closer to spring! Stay tuned...more on the way!

Appointment after appointment....

Last week was totally booked with appointments and this momma is still in recovery mode. Since we were approaching their "due date", everyone wanted to get their hands on them and check them out.
Here's the scoop...

Monday, Parker ended up at the pedicatrician. I was so worried about Payton not sounding good that it was a little strange to wake up to Parker sounding awful. It didn't take too long for the doc to call it - croup. With aggrivated BPD, reactive airway, and stridor. It sounded a little like he was always sucking air through a straw. So onto a weeks worth of oral steroids and ramp up the breathing treatments.

Tuesday was Early Intervention. We had out PT, OT, speech, and developmental therapists, case worker and a student all come to the house for our review. They have met every goal that's been put for them so at thsi time, PT, OT and developmental have discharged us. If in the future we need them, we can call and they can come do a new evaluation. Speech has also discharged Payton, but will continue to see Parker for an expressive speech delay.

Wednesday was Payton's turn at pulmonology. She sounded so awful on Tuesday night that if she had had a fever, I would have taken her to the E.R. But we held out at home since we were first up Wednesday morning. The pulmonologist says that she's normal for her - just crappy lungs. The P.A. thought she sounded ok when we were there. If she had souded bad while we were there, we'd of been sent downstairs for xrays. They gave us a script for oral steroids in case she started to go downhill, hoping that would be enough to keep her out of the E.R. They also gave us the inhaler form of one of her breathing treatments. We can use it with her special spacer to take the medicine if we're out and about and she starts to sound a little rough. Next visit will be in 6 months.

Thursday was the NICU follow-up clinic. Luckily Chris came with me to this one because they split them into two rooms to see what they could do without watching each other. When they brought them back together and asked them to do a few things, they were completely over being there. The doc made everyone leave the room and would poke his head in to tell us what to get them to do, then the group of them watched through the two-way mirror at the end of the room. They gave us referrals to a few new places to address some issues, but said that overall things look good and we were being discharged from there as well.

That's the latest from here. They're both holding their own and both just have a cold that hasn't evolved into anything else (fingers crossed!). This week is pretty quiet on the doctor front (fingers crossed again!) except for finally seeing the allergist for Parker.

By the end of it all - with a 2 hour drive home Wednesday nigth from the ice - with work, laundry, groceries, and life, I need a vacation to recover :)

And I promise coming soon....some special events coming up!

The 2 year checkup

We had our 2 year checkup last week. Here's the lowdown -

Payton - Her lung are clear after being sick twince in the past month. We'll see how she does with her new inhaler as we start cold and flu season. We talked about lockdown for this winter like we've done the past two season. Have you ever tried to keep two 2 year olds entertained for months at home? So we'll just avoid the crowds and sick people, say a few prayers, cross our fingers and see what we get. She had to get her finger poked (which she did like a trooper and didn't make a peep) and a flu shot this time. She's not anemic this time which is good. In the future there will probably be a thyroid and bone age test done but he's not too worried about it right now. She has grown in all areas so there's no concerns there at all. She's 32 inches (8%) and 25lbs 13oz (37%). Not too bad for not correcting their age anymore.


Parker - Dr. W said that he continues to grow but not very fast, and pumping more calories into him won't make him grow. At some time in the future we may test his tyroid and bone age test done too. He also got his finger poked and a flu shot and it was quite a dramatic event. We talked about getting him off his tube. He gets enough calories from his tube feedings so everything else is extra, and he's only gained about 2 pounds this year so far (all his clothes from last winter still fit him, they might just be a little short). And he doesn't like to drink. We talked about changing feeding tube schedules. I'm still hung up on the weight gain issue so we are going to see a new GI doctor this week to talk about it. If they tell me that I'm crazy I'll back off for a little while. But that tube isn't going anywhere anytime soon. And his head has grown more this time so that is a good thing to not have to worry about that too. He's 31.25 inches (2%) and 22lbs 1oz (3%).

We have therapy this week and next week, see the GI on Thursday and then get ready for an ENT appointment the beginning of November to talk about another procedure for Parker. We'll keep you updated!