Sophie's sitter told me yesterday that her husband has a brain tumor that has to be removed. If it's not, he will definately go blind. They aren't sure yet if it's cancer, but regardless, it has to come out. She can't be any older than 30, and her husband can't be much more than 35. How is this my 2nd run-in with a brain tumor on a young-ish male?
Apparently, they've known about the tumor for a while, but only recently has the doctor been very firm that it needs to be removed. His surgery is July 16, which means that Sophie's last day at her in-home daycare will be July 13.
Stacey (the sitter) said that she received the call about the surgery yesterday, while she was holding Sophie. Besides the obvious feelings brought on by the call, she said her next feeling was sadness that she wouldn't be able to care for Sophie anymore. The actual recovery will take a few weeks, but then once he comes home they absolutely cannot risk germs in the house, so she's shutting down her business.
I just feel so sad for Sophie. First her Nana, and now Stacey, who she ADORES. I just wish I knew how easily (or not) she can process something like this. She's a cautious little girl, very much an observer before she dives into something. It took her awhile to get comfortable at Stacey's, and become friends with the other kids. At least we can plan the "good-bye" and it's not like we have to be strangers. I fully intend on helping out Stacey's family with some meals, or house-cleaning, or something.
Thursday, May 31, 2012
Wednesday, May 23, 2012
Specialist #551
Avery has a pediatric GI appt scheduled. It's been a long time coming, and I don't know what's really taken so long to pull the trigger. She has been on Nutramigen formula since she was 10 weeks old. Nothing short of my eating bread/water was going to make her little tummy happy.
At her 6 month pedi appt, the dr suggested that most babies can be weaned off the sensative tummy stuff at about that age. I started weaning her...slllloooowwwwwwllllllyyyy. I did not want a repeat of those first 10 weeks. I'm talking, cutting down one scoop every 10-14 days. Things were going well, she was tolerating the other formula that I was using as replacement. And then suddenly, almost like the switch flipped back, the tummy issues were back. This all corresponded with the introduction of solid foods, as well as the onset of her UTI.
We're now back to nothing in the freaking world can make her tummy happy, even going back 100% on the Nutramigen.
I've talked to the nurses. I've followed all of their guidance. I introduced prune juice. She now gets 6 oz a day. We cut out apples and bananas. We tryed a probiotic. NOTHING will stop the obvious pain she is in before she poops. HOURS before she poops she's in pain. When she finally poops, it's like water. As the nurse told me, she should not be in THAT much pain if there is just water coming out.
She's miserable, can't be soothed. I'm back to swaddling her full time, because it's the only way she'll sleep through the night.
After screaming in pain from 12-3 am a few nights ago, I took her in to see the pedi. She's at a loss. Things SOUND fine in there, but clearly there's something wrong. She looked at her poor little bum. It appears to be fine. Whatever is going on, is definately internal. I think she felt bad referring us to another specialist. She made the comment that "you guys must think I can't make a decision on my own." To the contrary, she has NEVER steered us wrong, and each time we've been referred her suspicion (of whatever) has been confirmed.
So, here we go again. We now have an orthopedist, physical therapist, ENT, opthomolgist, one MRI and more ultrasounds than I can count under our belt. Not to mention that Sophie was in the ER on Saturday night, where her fever topped out at 105 and she was having asthma symptoms. Diagnosis was a double ear infection. I haven't seen her that sick since she was hospitalized for the first time last March. I really thought she was headed back for another hospital stay.
At her 6 month pedi appt, the dr suggested that most babies can be weaned off the sensative tummy stuff at about that age. I started weaning her...slllloooowwwwwwllllllyyyy. I did not want a repeat of those first 10 weeks. I'm talking, cutting down one scoop every 10-14 days. Things were going well, she was tolerating the other formula that I was using as replacement. And then suddenly, almost like the switch flipped back, the tummy issues were back. This all corresponded with the introduction of solid foods, as well as the onset of her UTI.
We're now back to nothing in the freaking world can make her tummy happy, even going back 100% on the Nutramigen.
I've talked to the nurses. I've followed all of their guidance. I introduced prune juice. She now gets 6 oz a day. We cut out apples and bananas. We tryed a probiotic. NOTHING will stop the obvious pain she is in before she poops. HOURS before she poops she's in pain. When she finally poops, it's like water. As the nurse told me, she should not be in THAT much pain if there is just water coming out.
She's miserable, can't be soothed. I'm back to swaddling her full time, because it's the only way she'll sleep through the night.
After screaming in pain from 12-3 am a few nights ago, I took her in to see the pedi. She's at a loss. Things SOUND fine in there, but clearly there's something wrong. She looked at her poor little bum. It appears to be fine. Whatever is going on, is definately internal. I think she felt bad referring us to another specialist. She made the comment that "you guys must think I can't make a decision on my own." To the contrary, she has NEVER steered us wrong, and each time we've been referred her suspicion (of whatever) has been confirmed.
So, here we go again. We now have an orthopedist, physical therapist, ENT, opthomolgist, one MRI and more ultrasounds than I can count under our belt. Not to mention that Sophie was in the ER on Saturday night, where her fever topped out at 105 and she was having asthma symptoms. Diagnosis was a double ear infection. I haven't seen her that sick since she was hospitalized for the first time last March. I really thought she was headed back for another hospital stay.
Monday, May 14, 2012
Mother's Day 2012
After we endured 4 hours from a screaming Connor, the day got progressively better Poor guy. I thought he was teething, but in hindsight I think it was tummy trouble. These two little babies have more issues than I would ever think possible with their stomachs/gas/poop/etc. I’m not sure what more we can deal with in this area then we already have, but you won’t catch me saying that outloud!
I was able to “sleep in” until 7:45, which is quite an accomplishment since Connor’s screaming started at 6:30. Dan gave me a card, which was more than enough, especially considering my semi recent splurges on an IPad and new DSLR camera. I was a bit sad that Sophie’s sitter hadn’t sent anything home for me that Sophie had made
My parents and grandmother came to visit for a bit, and then it was back to business as usual. I did get the almost impossible gift of having each of my 3 babies nap on me. First Connor, who was completely exhausted from his scream-fest, slept on me for an hour. As he was waking, Avery was starting to melt-down so then SHE fell asleep on me. Last but not least, at 3:55, Sophie finally gave in and fell asleep in my arms. I can’t think of much better presents than those.
As Avery fell asleep last night (the first time), I held her for almost an hour, as thoughts of my mother in law floated around in my head. It was Sunday, it was Mother’s Day, and it was gorgeous outside. Under other circumstances, she would most definitely have been at our house, waiting for Dan to finish grilling. I could tell he was thinking about her too. I know he thinks about her often, but there are times when he’ll go to the grocery, or a restaurant, and bring something home that she would have bought. Last night it was asparagus. She loved grilled asparagus, so that’s what we had
I keep thinking about an argument that he and I had a few weeks before she died. I was standing in the kitchen, and he was in the dining room. The twins were about 4 weeks old. We weren’t yelling, but our voices were raised. It was the same disagreement that came up frequently in those days. “You need to quit asking your mom for so much help with the babies.” Don’t get me wrong, she was a tremendous help to us, but I was also of the opinion that we needed to figure out how to do this thing/how to manage, on our own. I will never forget him saying something very close to “she could have a stroke and die tomorrow.” My response was “oh whatever, your mom is not going to DIE.” And then she did.
One of the last things out of Sophie’s mouth last night was “Nana. Gone.” She says it with finality.
And for a few pics of the McBabies…
Pardon Mr. Man’s snot droplet. There is no time in my world right now for Photo Shop!
Avery, Mother’s Day Eve…the twins were almost completely unswaddled, but then the UTI hit (as well as the re-emergence of tummy issues), so I swaddle her as needed. She’s still small enough to fit in there
Santa brought this to Sophie, but it never made it under the tree.
Finally, (hoping this works here), a 25 second video of Sophie and Avery, about 10 pm last night. I have NEVER heard Avery giggle like this. Sophie LOVED the attention she was getting from her. She would dance a bit and Avery would just give these belly laughs. It went on for a few minutes:)
I was able to “sleep in” until 7:45, which is quite an accomplishment since Connor’s screaming started at 6:30. Dan gave me a card, which was more than enough, especially considering my semi recent splurges on an IPad and new DSLR camera. I was a bit sad that Sophie’s sitter hadn’t sent anything home for me that Sophie had made
My parents and grandmother came to visit for a bit, and then it was back to business as usual. I did get the almost impossible gift of having each of my 3 babies nap on me. First Connor, who was completely exhausted from his scream-fest, slept on me for an hour. As he was waking, Avery was starting to melt-down so then SHE fell asleep on me. Last but not least, at 3:55, Sophie finally gave in and fell asleep in my arms. I can’t think of much better presents than those.
As Avery fell asleep last night (the first time), I held her for almost an hour, as thoughts of my mother in law floated around in my head. It was Sunday, it was Mother’s Day, and it was gorgeous outside. Under other circumstances, she would most definitely have been at our house, waiting for Dan to finish grilling. I could tell he was thinking about her too. I know he thinks about her often, but there are times when he’ll go to the grocery, or a restaurant, and bring something home that she would have bought. Last night it was asparagus. She loved grilled asparagus, so that’s what we had
I keep thinking about an argument that he and I had a few weeks before she died. I was standing in the kitchen, and he was in the dining room. The twins were about 4 weeks old. We weren’t yelling, but our voices were raised. It was the same disagreement that came up frequently in those days. “You need to quit asking your mom for so much help with the babies.” Don’t get me wrong, she was a tremendous help to us, but I was also of the opinion that we needed to figure out how to do this thing/how to manage, on our own. I will never forget him saying something very close to “she could have a stroke and die tomorrow.” My response was “oh whatever, your mom is not going to DIE.” And then she did.
One of the last things out of Sophie’s mouth last night was “Nana. Gone.” She says it with finality.
And for a few pics of the McBabies…
Pardon Mr. Man’s snot droplet. There is no time in my world right now for Photo Shop!
Avery, Mother’s Day Eve…the twins were almost completely unswaddled, but then the UTI hit (as well as the re-emergence of tummy issues), so I swaddle her as needed. She’s still small enough to fit in there
Santa brought this to Sophie, but it never made it under the tree.
Finally, (hoping this works here), a 25 second video of Sophie and Avery, about 10 pm last night. I have NEVER heard Avery giggle like this. Sophie LOVED the attention she was getting from her. She would dance a bit and Avery would just give these belly laughs. It went on for a few minutes:)
Friday, May 11, 2012
29 months!
May 5 marked Sophie’s 29th “month day”
A few unofficial stats…
1) Size 5 diaper
2) Wearing 2T and 3T clothes. 2T on bottom, 3T on top because she likes to make sure her belly is covered:)
3) her hair continues to lighten. She got it cut a few weeks ago and the hairdresser mentioned that her "new" hair is very very blonde. Her curl will be gone with the next hair cut:(
4) Grey-blue eyes.
5) Definitely has phases of food likes and dislikes. Likes are "usually" cheese, chicken nuggets, goldfish, bananas, grapes, yogurt.
6) STILL sleeping in our bed. I have GOT to work on this.
7) Said her first 5 word phrase a few weeks ago. Otherwise, communicates very well with her 3 word phrases. She’s suddenly been very quick to repeat things Dan and I say. This is both a fun and no-so-fun thing:-/
She’s started saying “big” words like elephant.
8) She has phases of self-potty training. This week alone she’s gone twice on her potty, without mentioning anything to us. We are letting her take the lead on this---just don’t have much time in our schedule to work on it. I’m sure it helps that she’s the only one at daycare who is NOT potty trained.
9) 2 year molars have been coming in. She's been drooling as much, if not more, than the babies.
10) She is SO shy in front of the camera. I can rarely get a smile.
11) She has officially been put in "time out", when she actually understood what was going on. She's not a fan. She likes to hit, and then laugh.
12) She says “a, b, c, d, and then the rest of the alphabet is just one super long syllable The Easter Bunny brought her a $1 set of cards that has a different letter on each one. She calls these her “ABC Cards” and LOVES them
13) She is starting to count, as well as hold up the right number of fingers when counting.
14) I don’t even know what term to use, but she’s started matching colors. If she’s playing with a red block and has on a red shirt, she’ll say “same.”
15) Her favorite color is purple.
16) She adores sidewalk chalk.
17) She’s recently taken a strong interest in playing mommy to her dolls. She’ll wrap them in a blanket and rock them.
18) If the babies cry and she’s not in the mood to hear it she’ll say “NO, A-B” or “NO, Ton-r.”
19) She likes to “pick the nuckies” from her toes. This makes me cringe, not because I think it’s gross (it’s really funny!), but because I hope I’m not witnessing the onset of OCD! It has gotten better over the past few weeks, I just don’t mention anything when I see her doing it.
20) This is her "I know I'm in trouble look." Head down, chin pulled into her chest;)
Sophie trying to put her toes in her mouth, because her brother and sister like to do the same:)
A few unofficial stats…
1) Size 5 diaper
2) Wearing 2T and 3T clothes. 2T on bottom, 3T on top because she likes to make sure her belly is covered:)
3) her hair continues to lighten. She got it cut a few weeks ago and the hairdresser mentioned that her "new" hair is very very blonde. Her curl will be gone with the next hair cut:(
4) Grey-blue eyes.
5) Definitely has phases of food likes and dislikes. Likes are "usually" cheese, chicken nuggets, goldfish, bananas, grapes, yogurt.
6) STILL sleeping in our bed. I have GOT to work on this.
7) Said her first 5 word phrase a few weeks ago. Otherwise, communicates very well with her 3 word phrases. She’s suddenly been very quick to repeat things Dan and I say. This is both a fun and no-so-fun thing:-/
She’s started saying “big” words like elephant.
8) She has phases of self-potty training. This week alone she’s gone twice on her potty, without mentioning anything to us. We are letting her take the lead on this---just don’t have much time in our schedule to work on it. I’m sure it helps that she’s the only one at daycare who is NOT potty trained.
9) 2 year molars have been coming in. She's been drooling as much, if not more, than the babies.
10) She is SO shy in front of the camera. I can rarely get a smile.
11) She has officially been put in "time out", when she actually understood what was going on. She's not a fan. She likes to hit, and then laugh.
12) She says “a, b, c, d, and then the rest of the alphabet is just one super long syllable The Easter Bunny brought her a $1 set of cards that has a different letter on each one. She calls these her “ABC Cards” and LOVES them
13) She is starting to count, as well as hold up the right number of fingers when counting.
14) I don’t even know what term to use, but she’s started matching colors. If she’s playing with a red block and has on a red shirt, she’ll say “same.”
15) Her favorite color is purple.
16) She adores sidewalk chalk.
17) She’s recently taken a strong interest in playing mommy to her dolls. She’ll wrap them in a blanket and rock them.
18) If the babies cry and she’s not in the mood to hear it she’ll say “NO, A-B” or “NO, Ton-r.”
19) She likes to “pick the nuckies” from her toes. This makes me cringe, not because I think it’s gross (it’s really funny!), but because I hope I’m not witnessing the onset of OCD! It has gotten better over the past few weeks, I just don’t mention anything when I see her doing it.
20) This is her "I know I'm in trouble look." Head down, chin pulled into her chest;)
Sophie trying to put her toes in her mouth, because her brother and sister like to do the same:)
A classic Sophie face (and legs complete with blue highlighter). This was taken about a month ago. While we're at it, classic Connor with his belly hanging out and hand in his mouth:)
Ignore me, but this is another classic Sophie face that I am NEVER able to capture. She loved our self-portrait session:)
Thursday, May 3, 2012
Revolving door??
We need a revolving door at Child.ren's Hospital.
Yesterday was Connor's monthly follow-up with ENT to check on the status of his hemangioma. He's been getting 1 ml 3x daily of Propanalol. I honestly don't check the lump anymore. I figure there are only so many things in my life I can control, and his hemangioma is not one of them. I'm turning it all over to the dr and the medicine, hoping for the best.
The night before the appointment, I did check it, meaning I felt it. It felt bigger, more dispersed, further into his cheek. I've never been a good judge of the firmness of the lump, so I didn't notice a difference there. ENT agreed that it seemed bigger, and in her opinion, more firm. It's growing, despite the meds. He had very little weight gain in this last month, just a few ounces, but because the current dose doesn't seem to be working, she upped the Propanalol dose to 1.3 ml TID. She seemed concerned. I'm concerned. We'll revisit this in early June.
He's also been pulling at his ears. She didn't see signs of infection, but did notice fluid that was present at the last appt, so she agreed that he needs an antibiotic for that. Great, another med to give;)
I think I mentioned many days ago that both babies have been pretty gassy, and we've completely revamped their diet. That change has helped Connor a lot. Avery is still fighting something, couldn't be sure what, but simply tooting and pooping was not easing her pain. For the past several days I've noticed that I can smell her urine. Not just when I change her dipe, but I can even smell it when I walk into a room that she's in.
On the way back from the ENT with COnnor, I decided to schedule an appt for her. Better safe than sorry. All I had to say to the nurse was "I can smell her pee" and she wanted to see us the same day. Dan and I played musical cars/musical babies and we end up at the dr 45 minutes later. She sees no indication of a UTI, but she DOES see a pretty major ear infection, which completely came out of left field. I had NO idea! Antiobiotic #2 ordered;)
Because I did report the urine smell issue, they wanted to check her urine. They cathed her (oh, what fun), and I saw the pee. It was crystal clear, I was relieved. THey checked it for blood. Negative. Another check off the list. We left the appt thinking that the ear infection is causing the crankiness, but in the back of my mind I was still uncertain about the smelly pee.
I get a call from the dr this morning. Not the nurse, not the secretary, but the dr. She's never called before. They grew the culture overnight, and Avery does indeed have a UTI. The dr was shocked. The meds she's taking for the ear infection should also take care of the UTI, but the dr wants us to have a renal ultrasound done. If all is normal, we'll just chalk this up to a random infection. If something is abnormal, they'll do a VSUG, which is a dye test of that region to see if there is blockage.
Subscribe to:
Posts (Atom)