Scrumpta-licious!

Medical Updates

At a recent followup visit with River's Urologist in Boston, we were relieved to learn that his kidneys look good. No damage from the residual urine he holds in his bladder, likely because he hasn't had any urinary tract infections. We'll continue to catheterize his bladder each night, and may have to increase to the morning time as well as he grows.

Seizures were gone for a bit, and now are back. Thankfully they're short laughing seizures but as one doc put it "seizures beget seizures" so we're not waiting around for them to get worse. We're in touch with the doctor, playing with his Lamictal dose. So far they seem to be holding steady at 6-8/day lasting only 15-30 seconds. Stay tuned.

River continues to be on a complicated regimen of laxatives and medications to help with motility. He gets weighed and measured monthly and has been slowly losing weight over the last few months. At first we attributed it to an occasional virus (he usually has to go on pedialyte for a couple days) but now we think it's because he's more active and burning more calories than he's able to take in. The dilemma becomes how do we get more calories in without overtaxing his delicate digestive system. It seems like we have a fairly reliable system going on now. Throw in a more concentrated formula or more volume and we lose that balance. Hopefully the "experts" will guide us through this.

On a more fun note, River got an ipad! I can't wait to share pictures and/or video with you. Until then check out what some other kiddos are doing with their ipads. www.babieswithipads.blogspot.com This is where I got the idea. Frances Hicks helped make it possible.

Beautiful Boys

River August, 3 years


Grayson Elvis, 6 months

Hike at Black Mountain

River's 1st day of preschool

All ready to go, and perhaps a bit excited...


Packing up the new stroller.


Glad to have a ramp.


His own cubby!


At the water table with Caroline.


Playing farm animals with Ethan.


A great 1st day!

August 27th, 2010

Brothers

In the thick of it

Life has changed so much with Grayson around. I have been back to work for over a month now, and much of my free time is occupied by snuggling, breastfeeding, soothing, occasional bill paying and infrequent socializing. We take many pictures but rarely upload them. Updating the blog feels far from my reach. We are relying heavily on our beloved PCAs (old and new) to provide River's daytime care while we go through this transition. We are still dealing with seizures and urinary retention with several upcoming appointments, but also transitioning services from Early Intervention to the public school system (new faces, planning meetings, etc.) I appreciate everyone's patience while we find this new balance in our lives. I promise I will try to post more pictures in the next month.

In the meantime I'm sharing this video made by our dear friend Julianna in order to raise funds for River's new mini-van. (You may want to have the tissues nearby.) Feel free to pass it on to anyone who you think may appreciate it, or may want to help with the funding piece.

Adapted Bike

River tried this adaptive bike at Cedar Crest last week. Although he couldn't pedal himself, he seemed to really enjoy himself. As a bonus, his bowels had certain benefits as well! Do you think we could use that as medical justification for this $4000 piece of equipment?

Motherhood

Grayson is almost 8 weeks old. It's hard to believe that I've been his mom for almost 2 months, and sad that I'll be going back to work in just another month. I am surprised by how bonded I am with him. I never felt this with River... I spent so much of my energy soothing him and trying to determine why he was upset. I wasn't able to experience the little moments of pleasure that I am having with Grayson. And breastfeeding... I love it. It was a struggle with River because of his weak suck and uncoordinated suck/swallow. Even bottle feeding was difficult. Feeding didn't become easy until he got the g-tube and we figured out which medications he needed to regulate his digestion. So to be able to feed Grayson peacefully by breastfeeding feels like a miracle. I am so grateful for this, and each little wonder I notice. His new smiles, his reaching out. His wide open eyes as I say his name. I am taking it all in. I am drunk with love for this little being.

And to contrast this blissful experience of motherhood is my relationship with River. Lately it feels like a struggle. River has not changed, but I have. My time and energy exhausted by Grayson. Most days I feel emotionally empty to be with River. It saddens me and worries me. Will it get better? Will I be able to reconnect with River? I think I know the answers to these questions but it doesn't stop me from asking them. Thankfully he and his mama (Julia) seem to be sharing a strong bond. I have to defer to her so much to meet his needs. And his PCAs... we couldn't do this without them. They know him so well, sometimes I think better than I do. It really has taken a village to raise River.
Reading in his stander

Just pictures

Looking good in his stander.



6.5 weeks, 7pounds 11ounces, 20.5 inches long.

Where have we been?

I've missed blogging. I have so much to write about. So much running through my head yet for much of the day I only have one hand available (breastfeeding, holding), one eye open and less brain power than I'm familiar with. Welcoming Grayson has been a huge adjustment. I don't think any parent can be prepared for the upheaval that a newborn brings, and we were no exception. Our life, once with order, routine and predictability, resembles a bunch of puzzle pieces which will fit together, but it's still too soon to see exactly how.

So I'll start with the most recent news and see how far I can get.

River had his spinal MRI last week. The results are that his spinal cord is not tethered (great news) but they did see a fluid collection around the thoracic portion of his cord, called syringohydromyelia. We'll have to see a neurosurgeon to find out if this could be causing his urinary symptoms, and whether it makes sense to do anything about it (presumably by draining the fluid). That appointment is scheduled for June 10th. In the meantime he is still having urinary retention and upsetting nighttime wakings which seem to be related to his bladder.

River's seizures are changing, improving I think. He has less of them each day but they seem to be more intense - more stiffening, no more laughing and more distressing for River (and us). He is finally at the full dose of Lamictal (50mg) - we had to go slowly because of the risk of rash which can be life threatening. He also has increased stomach sensitivity and sedation each time we make an increase which fortunately only lasts a day or two. The doc is recommending we continue increasing every 2 weeks until we get to 100mg daily. Since we've seen some improvement at 50mg, perhaps 100mg will be even more improvement. The epileptologist's goal is for him to only have a few seizures a week but I can't imagine him having these as he gets older - they are very scary.

He continues to work on his weekly therapies. Yesterday we got him positioned in the Kelty backpack which was wonderful. He's on top of the world when he's in the pack, ready for any outdoor adventure! We've also been having meetings to discuss his transition from early intervention to the school system which happens at 3 years old. He'll have different therapists and they'll either come to our home or meet him at preschool, yes preschool. It's a far off goal, but one that I can envision. We found what we think would be an appropriate classroom setting for him and the school system seems willing to provide him with the support he'll need (mainly 1-on-1 aides).

Grayson is six weeks old this week and probably weighs over 7 pounds by now. Last week he weighed 6-13 and had been gaining over an ounce each day. This is impressive considering it took him 3-4 weeks to get to his birth weight of 5-4. All this breastfeeding is for good reason!


River enjoying swinging outside while watching his tee tee toy suspended in front of him.

Brothers!

Grayson Elvis Chase says Hello!

Little Brother is Here!

4/7/10 2:04am
5 pounds, 4 ounces, 18 inches long
Born at home!

River learning to crawl

Mary is back from Italy and full of energy for River to learn how to crawl. I was in disbelief when I first heard her say this but I can see the possibility! Very exciting!

After you press play, pause the video until it uploads fully so that it doesn't start and stop.

Quick Urinary Update and Pregnancy Complaints

Wow, seems like a lot is happening fast. I haven't updated in just a couple weeks but it feels like a lot has changed. Fortunately I'm still pregnant (36 weeks tomorrow) and now working part-time per doctor's orders. I am feeling so much better now that I am able to get some rest each day because I'm certainly not sleeping much at night.

River's night continue to be challenging. We are catheterizing him twice a day (morning and night) to check his residual urine after he pees. We are getting better at it, and so is he. Tonight he barely fussed at all. I'm not sure if this will be a permanent change for us - I think at this point we are just collecting data so the urologist can advise us how to proceed until the spinal MRI in mid-May. Unfortunately, the emptying of the bladder each night does not help him sleep any better overnight. We're back to dosing him regularly with tylenol, motrin and clonipin. At least I can be confident that he's not squirmy and upset because of an overfull bladder.

He spent his first night at Cedarcrest last week. We've been trying to get him there for months for a "practice" night so that he can spend a couple days there when the baby is born. Something always came up postponing - trips to Boston, illness, digestion issues, etc. Finally it happened, and the timing could not have been better. We'd been having some very rough nights and we desperately needed some sleep. Once I got over the sadness of leaving him there, I was able to enjoy having a restful night of sleep... as restful as it gets this far along in pregnancy.

Now that we're just about 36 weeks we won't be leaving home until the baby is born. No more trips to Boston or Dartmouth, which is a relief. It's nice to stay home and continue to nest. The weather is improving and I'm looking forward to walking outside again. Not that I have a ton of energy, but a walk around the block feels manageable. It is surreal to think we could have a baby anytime now. I don't feel completely ready (would I ever?) but we seem to have everything we need to take care of a little one.

I can't understand how this has happened but for the first time in my entire pregnancy I have heartburn. Usually women get it much earlier and it starts to resolve as they get near the end of pregnancy when the baby drops. Not me. I've loved spicy food the entire pregnancy, now if I eat the blandest food after 9pm I'm up with heartburn (now for example). Perhaps it's all catching up with me but I'd like to be able to sleep in a lying down position, please. Suggestions?

Ketogenic, Urodynamics and Equipment Clinic

Just some quick updates because I am SO tired. By the way, Julia says I should just get used to being exhausted for the next 7 or 8 weeks. I do not like that answer, so if you have more supportive advice, feel free to send it my way.

Ketogenic Diet. This appointment was much longer than expected. Apparently it was a full consult - with a physician, nutritionist and social worker. It went so long that I decided to cancel and reschedule the appointment for the Vagal Nerve Stimulator (VNS). Basically it's a high fat, low carb diet which changes his metabolism so that he has less seizures. With the number of medications we've tried and not had success with, the doctor feels like River would be a good candidate (although we are still waiting to see if the Lamictal will make any difference). The biggest challenge for River would be his already sluggish digestion. The fats will slow down his digestion even more, possibly making this diet intolerable for him. I'll be consulting with his gastroenterologist to get her opinion and I'm hoping we'll proceed with it in May or June after baby arrives. He'll need to be admitted for almost a week so they can monitor his ketones (produced when the body burns fat for energy) and make sure he is tolerating the diet.

I really enjoyed the physician we met with - very good at explaining, and interacting with us and River. It's so wonderful to meet a doctor who has the ability to connect to patients in this way. During this lengthy consult we also met with a very kind social worker who would like to help us get more overnight respite. Even though we have a pediatric residential facility just 30 minutes away from us (in NH) which provides overnight pediatric respite care, our VT insurance will not cover this benefit. I've tried to pursue this before and ran out of steam, so it's nice that someone else is willing to help advocate for this.

Urodynamics Study. It was not nearly as bad as I had anticipated. While River did have three probes put IN him (not fun), it seemed only painful for a minute and then he was able to relax. The whole study took just over an hour with a Urologist, Neurologist, Radiology technician, CMA and 2 RNs. They explained everything as they went along - and we asked a lot of questions. The brief analysis we got is that his reflexes all work well but his bladder is not coordinated with his urethreal sphincter. To me this means that his bladder is pushing but is sphincter is not letting go. So his bladder can't fully empty, and sometimes can't empty at all. I'm still waiting on our urologist to give us more information - I'd like an official diagnosis and any intervention we can do to help alleviate the problem. For now River is sleeping relatively well - only 1 or 2 night wakings and most nights we get a good stretch of sleep. My bladder is not letting me sleep so much but that is another story.

Wow, this post is turning into a long one. But there is one more topic I want to cover.

Equipment Clinic. River's current BOB stroller is no longer meeting his needs. While it works fine for strolling him around, it does not offer the appropriate amount of support he needs to engage with the outside world. We've been waiting for this equipment clinic for some time now so that we can test various "adaptive strollers." He'll probably be ready for a wheelchair in a few years but this is the step before the wheelchair. The good news is that we think we found a stroller that works well for him. It has most of the features we think he needs to be comfortable. In fact he fell asleep in the chair while we were testing it out!



Doesn't he look like such a big boy?? Hopefully we'll have it in a couple months... just in time to take walks with his new brother.

It's March!

I can't believe it's March already. It feels like just yesterday I was saying to myself how we just have to get through winter and then we'll have Spring and a new baby to look forward to. Well we are suddenly excruciatingly close and counting down... trying to organize our life as much as possible (ha ha ha) before a new baby replaces all ideas of organization with thoughts of a good night's sleep. So here's a recent belly picture to show you what 31 weeks looks like. What it feels like is much different, but I'll save that for another fun blog post.


And before I get into the nitty gritty of River's exciting life, I'd like to brag about Julia's exceptional cooking skills. What a lucky woman I am. Here is a meal of roast pork with pears she made after spotting a recipe she liked in a William Sonoma magazine. It was delicous and probably tasted just as good in our hand-me-down pot as it would have in the $200 Le Creuset pan it was advertising.


And finally, what I presume you really want to hear about is our little boo bear, River. He's had a difficult few weeks with this urinary retention issue. We'd been loosely keeping track of his voiding pattern when one Friday afternoon I noticed that he had not peed all day, which turned into not peeing all night. He went a full 26 hours without emptying his bladder when we brought him into the ER so they could empty his bladder by catheter. The ER was great. They gave us a private room and were able to catheterize him on the first try. We were there for about 4 hours when they discharged us home to follow up in Boston. On Sunday morning we drove back to the ER (30 minutes away) because he again hadn't peed in 18 hours, but just before they cathed him he wet his diaper. Smart boy. In Boston he'll be doing a urodynamics study to evaluate how the bladder and urethral sphincter are working. I'm a bit anxious about it as I know it will be uncomfortable for him, but I'd rather not go through a 24 hour period of dry diapers again.

Here's a little boy getting his bladder emptied for him... knocked out from all the crying he'd been doing, and a little tylenol-motrin cocktail.



Feeling a little more like himself here...


Finally the last news is that we've started him on a new anti-seizure medication. We had really hoped the banzel would be the golden ticket but it's clearly not so we've added Lamictal to his medication regime. One of the side effects is a potentially dangerous rash so we have to start at a very low dose and gradually increase. I think it will take 2-3 months to have him at the full dose. So far the side effects seem to be minimal and no rash to report. We also have consults coming up with neurosurgery to discuss Vagal Nerve Stimulation (VNS) and nutrition/dietary to discuss the Ketogenic diet. As River's epileptologist tells us, controlling his seizures may require more than just medication, referring to the dietary changes and/or the VNS. At this point the seizures don't seem to be significantly worse, but they are significant enough to make me want to stop them. They are only a little scary to me now, but what will they be like when he's bigger/stronger and I can't hug him while he's having them?

Speaking of hugging, I wish I could share with each of you the feeling I have of snuggling with River when he's needing comfort. At 2 1/2 he is still so squishy and soft, easily conforming to my body (and my big belly) as we rock together late at night. He falls back to sleep in my arms with his mouth open, looking so precious, perfect and innocent. It melts me. It keeps me going. It reminds me of the intensity of my love for him, and how much it has grown since he was born.

Quick Sleep Update

Since our minor changes to River's nighttime schedule (no melatonin and a smaller 8pm feeding), he hasn't had any middle of the night screaming in the last 3 out of 4 nights. And when he does wake up he usually just puts himself back to sleep. Hooray, River!!

Urologist

There aren't many specialists we haven't been to. Urology was one of them, until today. I began noticing some regularity to River's recent night wakings... 5 hours after his bedtime and last feeding, he wakes up fussing, accompanied by lots of wiggling and discomfort. This frequently develops into screaming and arching - it's so difficult to watch, and there's virtually nothing we can do to comfort him. When this begins he usually has a dry diaper, and by the end of it his diaper is pretty soaked. No fever or other sign of infection. I decided it was time to consult with a urologist. So off to Boston we went for an ultrasound of his bladder and kidneys, and a meeting with yet another doctor.

The radiology appointment was enlightening. River had been cranky the entire drive to Boston. During the initial scan his bladder was noted to be quite full (150ml). Everything else checked out fine, but he was very irritable throughout the entire scanning session. The sonographer reported back to the doctor how full his bladder was and he recommended waiting until he peed to check his bladder again. And sure enough once he did pee, which took quite awhile, his disposition changed. He finally calmed and was able to settle.

The Urologist's explanation is that River is falling into such a deep sleep that he doesn't wake up overnight to pee until his bladder is so full that it is causing pain. We have some things to try at home - changing his feeding schedule around, decreasing his nighttime sleepy meds, and even waking him up overnight to try to get him to pee (not so sure how this one will fly). If none of these work, or if the problem gets worse, there are more invasive tests and more invasive treatments. I hope we don't have to go there.

We didn't bring the camera with us, which I'm regretful for as we had some pretty good boo-boo faces from Mr. R. I am glad that Julia and I are such good traveling companions, because he sure wasn't!

But here are some photos from his recent haircut. He was again in a very wiggly, uncooperative mood, but his stylist, Starr, was not to be overcome!

The many angles of cutting River's hair...











We didn't get an "after" shot but I'll work on it... he is still very handsome, even without his long locks.

Thanks Vera!

A new Saints fan thanks to the southern branch of the River Chase fan club...