I knew it would be hard to be away from the babies but it’s turning out to be much harder than I thought. Poor Sophie girl came down with a bug Monday night and has a tough two days. She’s had a fever, not been able to sleep and has not been hungry. As a result, poor Mamaw hasn’t gotten much sleep either and has her hands full. Aaron and his mom assure me it’s just a bug and have told me not to jump on a plane but I can’t help worrying. Thank goodness for Aaron’s mom, Tia and our neighbor Jean. I know she’s in good hands- I just wish I were there. Hopefully today will be better and she will begin feeling more like her old self. The next two days cannot go fast enough for me to get home and be with them again.
Yesterday the babies were suppose both to go to physical and speech therapy at the clinic but Aaron’s mom kept Sophie home since she wasn’t well and Tia took Trent to speech. According to Tia, the therapist was THRILLED with Trent’s progress. We are so proud of our little man. He is so much more verbal and we can now really understand when he say’s certain words. For a while we’ve really had to pay attention to what we said in front of Sophie since she repeated everything now we’re noticing Trent too is repeating things we say. Fortunately he’s just learning to say stuff like “oh well, Soaphie (as he calls his sister), yep etc. It’s very sweet.
Yesterday we also got the results from last week’s urine tests. They’re not sure why but it appears both babies are spilling a little protein. It’s just a little high and we’ve been told not to be overly concerned it is still something that needs to be watched. I don’t know much about kidney functions but I guess it’s time I learned. This also means that instead of the next set of tests being in a year, we will now repeat the urine tests in 3 months.
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We had a nice weekend. Aaron’s brother and his family came up with Southern California. The three cousins had SO much fun playing together. Cousin Lilly is about a year old than the babies but right in the ballpark to making playing fun. Little Holden is only 5 months so he just got to watch. Unfortunately it rained so there was no outside play. We did though take them to the Children’s Discovery Museum. WOW. What an awesome place. Aaron and I now know where we’re going to spend the rest of the raining days. The babies had a BLAST!!!!!
Today I’m getting on a plane for the first time since the babies came. This is so hard. It’s only for 4 days but it is 11 hours away. Thank goodness for Grandma Judy who makes this possible. I’ll only be gone until Friday afternoon but I’m already calculated I’ll miss two baths, 4 bedtimes, 4 wake ups, one physical therapy visit etc. Sophie ‘s been sleeping in her swing in Mamaw’s room – mostly without issue. Mamaw is going to do her best to get Sophie back in her crib before I get home. I sure hope she can work her Grandma magic… to make it work.
Tomorrow Mamaw, Tia and our neighbor Jean will take the babies to the PT clinic. I am so grateful for our friends and family. They’ve all gotten an earful from me on what to do if there are any medical emergencies.
Hopefully Aaron can email me pictures and put them on the phone for the next 4 days.
and put them on the phone for the next 4 days.
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Our little Sophie girl continues to struggle wit her sleeping. She’s still sleeping in her swing and each night is a new adventure. Thankfully last night went a little better and both Aaron and I were able to get some sleep. I so wish I knew how to change this for her. She seems so uncomfortable in her swing. She’ll sleep for a while but then wakes up every couple of hours and just cries out- like she’s in pain. She then goes right back to sleep – after with a diaper change or a bottle.
Grandma ( Mamaw) Judy is doing awesome with them. They so love being with her. I wish the weather were better so they could be outside and go to the park but Mamaw is doing great in spite of being trapped in the house.
This weekend Aaron’s brother and his family are coming up from Southern California. I just know the babies will have a blast with cousin Lilly (who will be 3 in June). I hope we our babies don’t teach Lilly any new bad habits – such a screaming, Sophie is a huge screaming fan and I fear by Monday- cousin Lilly may be a screaming as well. Trent is so funny when Sophie screams. He just stares at her like she’s such an overacting girl…
We are so proud of his talking. Everyday it gets a little easier to understand him. He’s working so hard at it.
On Monday I will travel for the first time since the babies have been born. Geez. Talk about anxiety. I know that they’re in great hands with Mamaw and Aaron- I just can’t imagine being away from them – and 11 hours away- for 4 days.
Today Grandma Judy and I took the babies for their appointment with the renal clinic. I had warned Grandma that it always takes hours and once again- Packard lived up to my predictions. Our appointment was scheduled at (9:15 and we finally left at 11:45. I was so happy to have Grandma with me. I had packed a bag of toys but even the waiting room was an adventure in itself. Each of us took turns chasing a baby out into the hallway. The building had a total decade issue (screaming 1970s) with the funky 70s sculpture in the lobby and the corresponding elevator (we could’ve walled from San Jose faster than we went up to the 3rd floor) but the doctors were great.
Since the urine bag test was a bust, I did try the cotton ball trick. What a total moment? Who packs their babies diapers with cotton balls? In any event, I did it. The nurse Missy (our neighbor Jean’s friend) squeezed them into a container and sent them out to the lab. Trent appeared to deliver more but we’ll see if the lab was able to get enough for a test from both babies.
So the clinic results. Overall, Trent looks great with normal blood work (WOOHOO) but his height is a bit lacking. Apparently kidney dysfunction and growth are directly related. However, my pediatrician had warned me previously that specialties really aren’t doing their job unless they find something and although its something we have to watch – he’s not that behind and this isn’t something I should add to our already long worry list.
Sophie blood though did show she once again has abnormal Creatin. Hmm. Ok. Nothing to worry about they said – but definitely something to watch. Also, although they weren’t able to get good blood pressures- something we need to watch. The cotton ball urine tests were set to the lab today and hopefully tomorrow or Friday I’ll get an email from Missy saying “ALL CLEAR. Sophie has to be followed by urology in June but assuming all is good-we doesn’t need to see renal for another year.
I feel like I’m getting to be an expert at these appointments. Why aren’t’ there toys at a pediatric clinic? Or computers? Thankfully I brought a toy bag (and the life saving Mamaw) but the babies of course we’re interested in anything but the toys I brought. Blow up gloves, medical equipment, and urine jars- soooo interesting.
Finally after almost 45 minutes both Mamaw and I gave up and just told them to go for it. Sophie had a complete metal down over fish (I had crackers but no fish crackers) after which she fell asleep and Trent went after the paper on the table and rolling stools. Finally Mamaw and I just said, “Have at it” and they did.
Last night was a non-sleep for Sophie so we’re hoping all the business of today will help make it a complete sleeping night.
Today the babies had their first day at the PT clinic. Trent for speech and Sophie for PT. I am so glad that I had half a brain when we were first told we needed PT and I somehow had the good sense to choose a PT clinic close to our house rather than one close to Stanford. I am so grateful I did that. I had taken Trent and Sophie to the clinic when they were very tiny babies when they first came home but today we actually had them in the gym at the therapy clinic. It was so hard to get them in the car to get them to go. Mamaw (grandma Judy) and I ran round and round the house trying to catch them to get them in the car. We think they thought they were going to the doctor as they both cried hysterically as we tried to get them into their car seats. Our new plan is for Tia to come to our house to get the car seats and then join us at therapy. Today she and Charles pulled up just as we were fighting to get in the car. They were SO happy to see Charles and both screamed his name.
Therapy was really interesting to watch. They have really cool equipment. They started them together in the gym- crawling through a tube, bouncing on the big medical ball, putting toys in a bin, moving on a swing, and then Trent went to one room to do speech and Sophie to the other to do PT. Her big focus in balance. The therapist worked with her having her go up and down a small set up stairs with bubbles being the prize to get up or down. We’ve been told we now need to practice having her go up and down using her hands to guide her on the railing. Hmm. Practice. As we were walking out I said to Tia I wasn’t sure how we’d do that (since we don’t have stairs in our house) but we both said “Jean” at the same time. Jean our neighbor (better known as St. Jean) has stair and I’m hoping her family wouldn’t mind loaning us their stairs for Sophie’s practice.
Tomorrow we go to Packard for our renal clinic. The nurse from the renal clinic emailed me today asking me about the urine tests and I had to come clean about not getting them. She suggested that I put cotton balls in their diapers tonight or tomorrow am so we’d be able to test their urine tomorrow when we get to our appointment. How I wish they’d suggested that earlier…Hopefully tomorrow we’ll just bring good news.
Today was Grandma ( Mamaw) Judy’s first full day of caring for the babies. Thank goodness they were able to play outside and spend a little time at the park. Trent was pretty easy going but Sophie was REALLY busy and kept Mamaw running all day long. I have a feeling she’s going to be our child that always keeps us on our toes. Late this afternoon we also took the up to El Camino hospital for their blood work and urinalysis tests in preparation for Wednesday’s renal clinic visit. Once again we tried with the special little bags to get urine samples and either we didn’t do it correctly or they just didn’t feel the need (even though they drank a whole lot of water during the day and I gave them bottles on the way to the hospital) but nothing to send to the lab…. Oh well.
I was sooo nice though to have a second pair of hands for the blood tests. The babies start to cry even before the tests start (loud I might add) and have to be held down. Thankfully Grandma Judy was with me to comfort one while the other had the test. They were both so brave.
Yesterday I threw a 75th birthday party for my dad. Thank goodness for Grandma Judy. Always the amazing cook, she made a wonderful feast that everybody thoroughly enjoyed. The babies were so thrilled to have their cousins and aunts to play with. Aunt Ann brought along her harmonica and she and Trent were able to play together. Cousin Richard (he’s 2 1/2) was also at our house and he and Trent had a ball. The weather was unseasonably warm and we all so enjoyed being able to enjoy our new backyard (although many of our plans are beyond dead from the horrible cold weather we had a couple of months ago) and watching the babies play.
I don’t think the baby really understood that is was “Gpa’s birthday but today we’ve noticed that both of them could almost say “Happy Birthday”. You have to listen really closely but it seems like that’s what they’re trying to say.
Tomorrow Grandma Ma Judy takes over babysitting while our nanny is on vacation. Both Aaron and I will do our best to try and make these two weeks as easy as possible for Mamaw. Hopefully the weather will cooperate so Mamaw isn’t stuck in the house with them.
Tomorrow Mamaw and I will also take them to the lab for urinalysis and blood work required for our Wednesday visit to the kidney doctor. My fingers are crossed that I can manage the urinalysis bags without issue so we get a good sample.