The perfect crappy end to a crappy week. Today Grandma and Grandpa Godlewski took Trent to his make up speech therapy appointment. Today was a continuation of his 6-month aasessment so they moved between 3 different rooms. As usually, just about everything Trent said during his sessions was relate to a “basketball? He just loves his therapist Lisa and his Grandparent s so for Trent- although he worked hard; it was a great way to spend a Friday afternoon.
Our little girl spent the afternoon playing with the neighborhood children and our caregiver Doris playing in the backyard. It’s looking like our backyard patio plus plants redo was good move. The perfect place for push toys, a climbing house and a basketball hope (plus the wrought iron gate to keep them all trapped).
Unfortunately tonight as we were playing in their room, Sophie suddenly stopped and begin to shake. The seizures are back. So much for the meds. Everything I’d been told went immediately out the window and I just started to yell for Aaron. Of course by the time he heard me it was over and she was walking around again, Ok so now what? We both questioned each other about giving her the full dose of her seizure meds and yes – we’ve both done it. So does this mean she’s growing out the dosage? I had seen some odd balance issues about 10 minutes prior to her event (or seizure) but thought she was just running too fast for her brain I guess not.
We’re not sure what to think. We wonder if she’s grown out of her dosage but who knows. Of course this happens on a Friday. I’ll leave a voice mail but there is no point to call the “on call doctor”. That would be just like starting over and this clearly isn’t an emergency. She seems tired tonight but bedtime still required lots of singing on my part. I sang for a good hour and she was quiet (he was crashed and snoring) but as soon as I slid out of the room she screamed. Thankfully it only lasted 10 or so minutes.
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Today I did something I’m not very proud of. I let my frustrations with my professional life interfere with my personal life and I took it out on Sophie when she was just being 2. I had a bad morning with work stuff and then when Sophie was stubborn and kept hitting me when I tried to change her – I yelled at her. I have felt horrible all day. After everything we’ve gone through – I can’t believe I did that. She ‘s just a little thing and has no idea I had a crappy business call or received a crummy email. And she shouldn’t have to know all that. I should just keep it in line. I have got to get it together. I love her so much and can’t believe I yelled at her. Crappy mommy moment and day… Of course being Sophie though she showed me. I was trying to change her pants and get her dressed. Needless to say when I took off her diaper and sleeper, she stood up in her crib and just peed like she’d had a gallon of water. Total crib wash was required. Talk about letting me know how she felt about my behavior. Smart lady.
Our little man’s language gets a little better everyday. His favorite thing to say is “Ok” but he say’s it in this funny way that just makes you smile. He sounds so adult when he says’s it. Poor little guy – we think he has allergies. He’s got this nasty cough that just won’t go away. A stuffed up nose goes with it. Hopefully the weather will settle soon and it will decide if its winter or spring. Between Trentman’s allergies and Sophie’s horrible struggle with eczema. I just want it to be hot or cold consistently so they both feel better.
Our newfound crib sleeping to a detour last night. Poor Sophie girl. She went down just fine but then woke up around 1pm holding her head and calling for mama. Although she couldn’t say it- I’m sure she was trying to tell me she had the mother of all headaches. All she could do while I was trying to calm her was hold her head and say “Mama, Mama, Mama.” It just broke my heart. Needless to say, the rest of the night was a bit bumpy. I can’t wait until she can tell me what’s really going on. Today though, she was fine. Aaron reminded me tonight we just have to take it one day at a time.
Today Tia and I took them to therapy. I accompanied Trent to his speech therapy appointment and Tia went with Sophie to physical therapy. Trent did great. He is so in love with his therapist. He does whatever she asks, listens to her and is so excited to learn. Today we worked on colors. One of the exercises entailed a fishing toy that required Trent to use a magnet rod to fish certain color of fish out of the water. Needless to say, Trent, Lisa (his therapist) and I all got wet. He was so happy. In preparation for his county assessment at the end of the month, I also answer a lot of questions and he had a lot of tests. It was SO hard not to help him cheat. The memories of the Stanford assessment are burned in my brain and I know he is so capable.
Sophie though continues to struggle with PT. She is so stubborn. She wants control and unfortunately in therapy- she can’t have it. It’s a war of wills. Sophie digs in and then the therapist digs in and the just disagree. We’re now working on the count of 10 whenever Sophie gets frustrated. The odd thing though is that she rarely gets totally frustrated at home. I know it sounds like I’m a mother with rose-colored glasses but if I were going to acknowledge which of my babies pitched more fits- Trent would certainly win.
I wonder if Sophie and her therapist could be just a bit too similar. This is so hard too since I know she gets this horrible stubborn trait from me.
Hopefully tonight is better for our little girl and she’ll just snuggle all night long in her crib with her toys, her new (very loved) sock rabbit, and her blanket.
Today was one of those reminders of how twins can keep a person busy. Such a Monday. Why is it that every time I wear a dress & heels, it becomes one of those big messy moments? Trent and a total blow out this morning and then Sophie went through her diaper. Needless to say, it required both babies’ beds to be stripped and the both almost ended up in the bath to rectify the situation. Usually I am so organized but this morning things just kind of got out of control and I almost walked out of the house without brushing my hair. Ofcourse if I wear jeans tomorrow, they’ll be no drama at . Thank goodness for review view mirrors. ….
They are so funny. When they get upset, one hugs my front legs and the other hugs my back legs. They are so loving towards one other. He is always watching for her and today when he hit his head, she gave us both a wide berth so I could comfort him and ensure he was ok. They read each other so well.
Tomorrow we have PT and speech. Tia and I will trade babies and she will take Sophie while I take Trent. Sophie seems to have much for of the separation anxiety so they’ll probably leave first. I’m looking forward to attending Trent’s speech session. It’s been weeks since I’ve observed him and I can’t wait to hear first hand what Lisa his therapist thinks of his progress.
In April we’ll be moving to a new therapy schedule. We’ve all finally acknowledged that the early intervention therapist didn’t connect with the babies and so we’ll be making a change in April. In the interim, Carol Block who has seen us on and off for almost two years will be coming to our home on Thursday afternoons, but then one of her new therapists will take over long term. Our next evaluation with the county is the last week in April so the next several weeks will be about creating a development strategy for the next 6 months.
Sophie’s balance and epilepsy continues to be a concern (as does Trent’s speech delays) but at least we know where we have to focus and somehow it doesn’t seem so scary.
We are having so much fun with our little ones. They just LOVE their new climbing toy and their new bubble mower. It’s amazing how excited they get by the bubbles coming out of the bubble mower. Hours of fun! Hopefully our physical therapist will notice the increased strength next week.
Yesterday we took them for a bike ride, the park and then for frozen yogurt. We are so lucky to have 3 wonderful parks within bike riding distance. They had a great time playing with the other little kids on a teeter-totter. The child they were playing with was two as well but made our twins looks like miniature kids. I’m so used to looking at them that I sometimes forget they’re smaller than the average 2 year old. We get reminded though when we’re asked how old they are (as we were on Saturday) and we see how the face of the person who asked…
Sophie’s sleeping continues to improve. She’s now sleeping in her crib until almost 5am. Huge victory! Trent is so funny though. He can sleep through anything. She can cry and cry and he just sleeps.
We’re back up to 3Mls of her meds. She is so good about taking them. She just opens her mouth She’s still wobbly when she walks but we’re chalking it up to her being a toddler and a new walker. Big Boy is wobbly too- just a little more steady on his feet than his sister. [[Image:the_kids/SKS32SR.JPG]] [[Image:the_kids/SK325S.JPG]][[Image:the_kids/TKS325.JPG]]
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Unfortunately the gradual weaning off Sophie’s seizure meds was not a success and she had a small seizure on Wednesday. Not horrible but still disappointing. I’ve spoken to the nurse practioner at Packard and we have now been directed to take her back up to the full dosage of her seizure meds and have to have regular check ups with the neurologist. We will try again in two years to wean her again. Apparently 2 years is the magic number and we may continue to try the weaning thing throughout her life- always at 2 year increments.The nurse practioner said while disappointing, it could’ve been much worse and we should be thankful she didn’t have a full seizure.
Sophie’s sleeping is improving though. Every night it gets a little better. I’ve had to return to my singing though. Big boy goes right down in his crib and crashes immediately but Sophie needs to fall asleep in her swing. After we put her down she sleeps for a while but then wakes up screaming. I then go in and sing to her while sitting next to the crib. It’s taken about an hour the last two days but well worth it. She’s now been sleeping to almost 5am. She has a total sense though when I’m ready to leave the room an immediately starts to cry when she hears me move. I’ve now taken to sliding on by butt out of their room. Whatever it takes….
The babies are climbing fools and today we put together a climbing toy for them in the back yard. Our living room furniture is still a great attraction (the piano bench moved to the attic last week) but the new climbing hours in the backyard seems to be a hit. Its also helping them working on their muscle tone and Sophie’s climbing. Trentman is physically pretty strong but we continue to work on his words and talking. Everyday we see such progress.
Our little people are starting to change and really develop their own personalities.
Trentman is the VERY protective old brother (I’ll be it just 5 minutes older) and is always very concerned where “Soaphie” is. He also has tried to be very supportive, as she’s started to sleep in her crib again. He has counseled her to seek the “binkie” (her very soft pink blanket) when she’s trying to calm down and has said “ Oh, Soaphie, Soaphie, Soaphie” as she’s crying after we put her down. Thankfully the sleeping has gotten to be a million times better and this week she’s crashed in the crib every night (after a little rocking etc) and stays until 4:30am where she cries out for a bottle and her mama. Such INCREDIBLE process. We are SO thrilled.
They are so connected. Both are always looking for each other and ensuring each is ok.
Sophie has gotten a little more dependent lately and now cries when I leave. I’m not sure why it’s suddenly stated. Trent is thrilled so see Aaron and cries but never I when we leave. It’s so odd for her to suddenly change.
Today I took Sophie to her PT appointment. I’d give it a B+. She mostly participated but was clearly done when she was done. It’s also a total control fight with her therapist. Typically I participate as well (sitting on the floor, bouncing on the medicine ball when necessary etc) so I was all prepared yesterday for the non-therapy yesterday- dressed appropriately. Needless to say, today also required casual dress so I could participate fully in therapy. I’ve also learned a new trick. Always bring bubbles. Sophie loves bubbles and they’re a great incentive to climb the stairs at therapy and walk on the balance beam. Whatever it takes. I now plan to bring them to every doctor’s appointment at Packard.
We’re still working on weaning Sophie from her meds but today during therapy we saw some behavior that looked like the seizures may have returned. Too early to push the panic button but definitely something we’re watching (as will her big, very sweet older brother).