Miss Sophie continues to get more social everyday. We’re thinking there could be an entertainment career in her future. Every morning she plays in her cube (her caregiver Doris got her a mirror for her cube which she just loves), kicking her legs- dancing in her crib, playing with her mobile and singing until we come get her. She doesn’t get upset – she just entertains herself for hours. Her big brother Trent sleeps through it all of course. Even at such a young age, Trent is a typical man – ignoring her chatter.
Its official- the increased dosage of priolosec is not improving his tummy issues at all. I think it may be time to reevaluate the whole thing and see if there isn’t something else going on. I worry about it a lot. He’s so happy to eat but can’t just keep his food down.
I never thought I’d actually look forwards to doctor’s appointments but this week I am. We’re just going for the RSV shot and the weigh in but I’m hoping the doctor will have some other recommendations or can help us get through the Stanford red tape to get him some help.
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What I wouldn’t give to be able to say the Trentman had a great day. Unfortunately today was still not the case. Our poor little man continues to struggle. He seems so upset all the time and nothing helps. On Friday we’re scheduled for our RSV shots and weigh in. I’m hoping the pediatrician can help us look for alternate solutions to try and help him through this.
It’s so funny to have two babies and have them be so different. Sophie girl continues to be happy. She’s so busy. Tonight during her bath she demonstrated for me that she’s now expanded her Jane Fonda routines to include water aerobics and we both got soaked. She of course thought this was quite funny and came me a big smile. I tried again tonight to get her blood pressure but she was moving too much. My plan is to try and take it at 3:30am when she’s sleeping (during my usual check in time with them).
We finally got a call from the Early Start folks and the home physical therapy visits start next week. We can’t wait!
My apologies for the issues with the pictures with yesterday’s entry but for I can’t get them to show completely. However, I’ve figured out if you drag them to your desk and then quite your browser, you’ll be able to see then the complete images.
The babies are very happy to be home and back in their cribs! They loved being with cousin Lilly and all the family but we can tell that they’re both used to their own beds (spinning around at night) and are way past sharing a crib and let us know it when we were in Los Angeles by waking up at 4:30am. Fortunately last night brought a complete nights rest for the entire Keene family.
Poor Trent continued to be fussy today. He has his good moments but the bad moments (or painful) are currently exceeding the good. The docs are hesitant though to change his meds since the reflux drugs he is on are considered the best and the “big dogs” for reflux.
Today we also received the medical summary from Sophie’s last visit to the nephrology clinic. I’m glad they send them but they still feel overwhelming reading through her history and the long term follow up for her kidneys. Its such a contrast to read through the 5 pages of detailed medical jargon that sounds so scary and then to look over to a peaceful baby sucking her thumb sitting in her bouncy chair, Its hard to believe the documents refer to the same little lady.
The babies were blessed to meet many family and friends this weekend who have been praying for them over the past 8 months. On Saturday, Grandma Judy threw an open house (thank you Corey and Kendra for allowing up to take over your beautiful house) for our Southern California family and friends to meet the babies. I’m not sure Sophie and Trent knew the party was for them but they certainly enjoyed getting held by everyone and cuddling.
We were reminded again of how many special people we have in our lives and how the support from all our friends and family allowed up to get to where we are today.
The trip home from southern cal unfortunately was more than an adventure than we hoped. The traffic home was about 10x worse than what we experiences on the way down and it are very apparent the increased dosage of Trentman’s reflux meds aren’t working. The poor guy cried for almost the entire 8 1/2 hours it took us to get home and spit just [just about everything he ate today. We finally pulled over and I jumped in the back to sit next to the babies and try to keep them from crying. I tried just about everything. I tried toys, food, singing and practically nothing worked. Finally after 2 hours of singing (even though I'd gone through everything I knew and was singing 100 bottles of beer on the wall) and they both went to sleep.
I know I must appear to be a paranoid mother but I just don't think that Trent's meds aren't working and there has got to be other meds that will help him. He just seems to hungry and can't keep his food down.
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The babies had a wonderful thanksgiving and spent their day being pasted from person to person (about 21 all total). Yesterday the Trentman seemed much better but today has been a bit tougher and he’s back to crying quite a bit without reason. I never thought I’d get to a place where I danced and sang in public places but now I’ve done I’ve managed to do it multiple stores and restaurants in both Northern and Southern California. Its funny a couple of friends have asked me what I say when people ask how old the babies are and I said it depends on how the person asks. Sometimes I say 8 months and other times I say 5 1/2. During the family dinner tonight at a restaurant was one of this in which I just went for the 5 1/2 months after my mother-n-law asked the waitress to guess and she said 2 months. Hmm. Although our babies are far from average, I know we’re growing and I certainly hope they look bigger than 2 months.
I think both babies have enjoyed meeting relatives and friends in so cal. Sophie has just been missing happy with everyone and Trent while not has social, is definitely interested in meeting new people.
Our babies had the special privilege of celebrating two Thanksgivings- the first being last Sunday evening with our wonderful neighbors. Unfortunately they were both fussy but while we were all trying different recipes (the objective our early dinner) so the babies got passed from neighbor to neighbor allowing Aaron and I to eat.
For our second Thanksgiving, we traveled to Los Angeles today. While Aaron and I really enjoyed the time we lived in LA (pre babies) we certainly were reminded one the many reasons we left. Yes, we know it was the biggest travel day of the year but WOW – the traffic was horrific. The babies did great but about the time we hit Westwood and it took us 1 1/2 hours to go 10 miles the babies more than hit the wall. They were SO mad. They had wet pants, were hungry and had just had enough of the car seats.
Unfortunately because of our travel, it was hard to tell if Trent’s increased med dosage is working. We’ll just keep our fingers crossed that they are indeed working and his days get more peaceful.
The Trentman had a bit of a better day and we’ve now gotten the go ahead from the pediatrician to increase his dosage of priolosec. I’m also trying yet another compounding pharmacy to get the meds made. I’ve never been one to go to mom and pop pharmacies ( and I’ve always wondered how they compete with the larger franchises) but now I find myself being really happy that they carry bananas and other things that allow me to shop and eat lunch while I’d waiting for the meds. We’re hopeful the increased dosage does the trick. We’re trying this for now until we can find out whom we need to follow up with on the GI team. I so wish now I had paid for attention during my high school chemistry class. I guess I never thought I’d have a need to really be proficient in metrics and conversions but – now I do.
The visiting nurse also came back to try and get Sophie’s bp with the digital machine I picked up yesterday. Unfortunately we were unable to get a reading. Sophie tries really hard to be still but she’s such a busy girl that she doesn’t understand she has to be still. My next plan is to wait until she’s asleep and then try.
Tomorrow we will take the babies on their first road trip. We’re driving to Los Angeles to celebrate thanksgiving with family. We’re very excited to see everyone but a bit nervous to be so far from our doctors. Although our doctor visits have cut down quite a bit, I’m still feeling anxious to be so far from the medical folks and not being able to run up the freeway if we need to.