Update on Alex

I realize that I haven't given an update on Alex recently. And I have GREAT news on that front.

Ever since Alex had physical therapy and craniosacral massage, he is back to his usual, happy self. He had a second session last Friday and has slept through the night with little or NO help every night since then. Alex back to eating most of a bottle without fussing or turning his head to swallow. He is now the easygoing, happy boy he used to be.


The therapist was pleased to see that Alex retained more than 90 percent of the work she did on him and suggested we do one more session. After that, we can just bring him in if he has any issues, whether they be developmental, digestive or sleep related.

We're still keeping Alex on his reflux medicines, because we think he does have some reflux issues. In a month or so, once we've had a chance to rest a bit, I think we'll reduce his medicine and see what happens. Because the cranoisacral therapy helps address digestive issues, I'm curious to see what will happen. Hopefully we'll be able to reduce the medicine, if not get rid of it entirely.

I cannot say enough about the craniosacral massage. I fed Alex a bottle during one of the therapy sessions and in minutes he went from slopping formula everywhere and sucking two or three times before pulling off to swallow to staying on the bottle and downing it easily without almost no mess. It was so amazing! During the last session, the therapist worked on his rib cage, which was "slightly deformed." Apparently the pregnancy was just as hard on Alex's ribs as it was on mine.

Interestingly, our therapist said that she did not believe in craniosacral massage. She pooh-poohed the technique when she was told it would help her. After a couple of years she decided to try it because nothing else was working, but first she did her homework. She learned that much of the research that has been done on the technique has been done by engineers, because the impact of craniosacral massage is structural to the body. She got such great results from craniosacral massage that after her first session she signed up to become certified in the technique. Quite an endorsement!

Craniosacral massage may not be the solution for everyone, but we are thrilled with the results. I feel so fortunate that we stumbled across this option so quickly, and I am so glad I didn't go ahead with a scope that likely wouldn't have shown anything anyway. Since we didn't change how we are treating his reflux, clearly the reflux was not the cause of his eating and sleeping problems.

Happy baby, happy mama, happy family!

A Relatively Peaceful Night

Last night wasn't perfect by any stretch, but Alex did better. He has been running a fever on and off since Thursday so I took him to the doctor yesterday and discovered he had an ear infection. Twenty four hours of antibiotic have started to clear that up, but we're still working on the rest of his issues. But with the ear pain taken care of Alex is much more his usual happy self!

Alex takes a dip in the sink

Sometimes Hope Wears Toe Socks

We had a good session with the physical therapist today. Her assessment showed that Alex has the muscle tone of about a 4-month-old, but of course, he has the body of an 8-month-old. That means that it can be uncomfortable or even painful for him to do all the things he wants to do, like crawl, stand, sit up etc... Basically, he's uncomfortable all the time, and the problem is getting worse as he gets bigger and his gross motor skills develop and he does more physically.

It explains why Alex is having trouble sleeping. He simply can't find a comfortable position. And it explains why he's flopping around in our arms at night. (It's like trying to hold a tornado.) Think about having a weak leg and trying to make it work like in rehab -- instead of having good control over your muscles, you would fling it forward to take a step.

In addition to the general physical therapy findings, the therapist also did a lot of craniosacral work on Alex. His lack of muscle tone has led to a lot of muscle tension that may be causing some of his digestive issues as well.

We will continue Alex's reflux meds, but I'm not going to worry about changing his formula and taking him gluten free right now. I want to give this a chance to work first, and then we'll see where we are. We have another appointment next Friday.

The therapist was very pleased with how well Alex responded. She was confident that she could help him (and already had in the first session), and that we could postpone a GI scope.

I share her confidence. As she assessed Alex she was able to tell me things about his behaviors, like the fact that he bangs his head in the crib and tends to sleep with his head turned to the left, that amazed me. How would she know those things? Because it creates certain tensions and tight muscles and she could feel all that.

I left the appointment with a wiped out baby. And while Alex may not sleep well yet tonight, a load of worry has been lifted off my shoulders.

I feel like we've got another soldier on our side in this battle to find and fix Alex's problem.

She just happens to wear toe socks.

This Is Torture

8 p.m. - all boys in bed

9 p.m. - Amelia finally in bed. Resettle Sam and Alex.

9:30 p.m. - eat supper

10:30 p.m. - to bed after cleaning kitchen, making bottles, picking up toys, starting dishwasher and another load of laundry, and updating the blog.

11:30 p.m. - up for 10 minutes to resettle Isaac

12:30 a.m. - up for 2 minutes to resettle Sam

1:30 a.m. - Alex cries. Pick him up and walk. Sit down with him. Alex cries. Repeat for an entire hour.

3:30 a.m. - Isaac starts to wail. Grab him before he can wake Alex. Spend 30 minutes getting him resettled.

5:45 a.m. - up with Alex. He finally takes a decent bottle -- his first in about 3 days.

6 a.m. - everyone's up for the day.

I've got to go get some work done while boys are up so I can nap later today. Keep praying for Alex and for all of us.

Too Late for Much of an Update

It's getting late and I'm getting tired, so this will be short. Alex saw the nurse practitioner today, and I left the appointment well...unsatisfied.

I got lots of "maybe it's this, but probably not," and no real answers. I got some suggestions for things to try, but nothing novel. They asked me to switch his formula, but he absolutely refused to drink the new formula, and based on the smell (a cross between cat urine and sour milk), I don't blame him. My pediatrician said to give him his regular formula -- better that he get some liquids in him.

I didn't expect answers out of this visit, but I did expect to feel like someone else was in this fight with us. I just wanted to know that I had an expert invested in helping us figure it out.

Instead, I left feeling like they have no clue, are shooting in the dark for ideas to try, and really, really just want to scope him.

How does the saying go? "If you only have a hammer everything looks like a nail." Yep. That's it.

Alex did have a better night last night, and we think it might have been the papaya extract that Sarah O. and Jerry sent. I gave it to him a couple of times today, so hopefully we'll have a good night tonight.

We've decided to try some alternative therapies for Alex before we rush to scope him, including cranio-sacral massage. We were referred by our chiropractor, and our appointment is Friday. I'm also working on an appointment with another pediatric GI doctor. Maybe I'll have better luck elsewhere in finding someone who wants to help us figure this out.

We really want to try some other things before we rush to an invasive procedure, and based on my track record with anesthetic, we have very good reasons to worry about any of our children being put under.

When I had a simple procedure requiring 30 minutes of anesthetic, it took 7 hours to wear off. And I found myself counting the doctor's stitches during my C-section with Amelia because I didn't respond well to the epidural. Even the spinal I had with the boys ("Rest assured that this will work," they said.) didn't work. It was supposed to last 8 hours, but wore off in less than 2, leaving me at the mercy of morphine to try to manage the pain. Scary stuff in anyone, but especially when you're dealing with little people.

Sorry to ramble a bit. No time to clean this up. Sleep is of the utmost importance. I'll post more later about the massage and all that, but for now, I'm off to bed and praying for a decent night for Alex.

Reflux Update

Alex had another bad night last night, though going for a drive seems to help. But we do have some good news. There was a cancellation at the specialist's office, so Alex has an appointment TOMORROW at 8 a.m. Sure beats waiting until July 22.

Alex: Blessed, blissful sleep. In a car seat. We'll take what we can get.

I'm so relieved we're seeing the doctor tomorrow. As anyone who has watched their child suffer will tell you, it's just awful. I hurt for Alex and I just want to make him feel better. It's horrible when you can't even comfort your child.

Counting today's two-hour nap, I've had a total of 13 hours of sleep in the last three days, so I'm keeping this short, but I have to give a shout out to a bunch of people who are helping us get through this.

Ellen M. who pleaded our case with the doctor's office and got Alex on the wait list and who did a late shift last night to give us a break.

Kyleen N. who did an early shift last night and assured me that I had a viable insanity defense. (Everyone needs sound legal counsel now and then!)

Alison R. who brought CHOCOLATE today and helped give the boys lunch and get them down for their afternoon nap, and her mom, Miriam, who flirted with Alex all through his meal then helped with clean up and nap time.

Sarah O. and her dad, Jerry, who sent an herbal remedy for us to try. I don't know if it will work, but at this point I'll try anything!

Jamie F. who came for most of the day and let me take a two-hour nap. It was probably the most precious sleep I have ever, ever had. I was almost fully functional afterwards. Jamie you are a star for watching babies, making bottles, and getting everyone down for the first time tonight (2 of 3 have even stayed down!). I really wasn't kidding when I said I was going to hold you hostage. (Refer to my thanks to my legal counsel above.)

Lorrie P. who recommended a doctor and offered to come help so I could nap. I may need to take you up on that, Lorrie!

My mom, Alice, who has listened to the babblings of a sleep-deprived crazy woman for the past few days and been on her own search to find something to help Alex.

Everyone who has sent us an email to let us know that they are thinking about us and praying for us. We appreciate your kindness.

Thank you, thank you, thank you all. Stay tuned for an update following tomorrow's doctor's visit.

Reflux Prevents Me From Giving This A Clever Title

Alex has reflux. It. Is. HORRIBLE.

Friday night he cried and cried and cried and I walked and walked and walked until he finally exhausted himself and slept for a few hours before we repeated the process. I figure my snatches of sleep added up to about 3 hours and I walked approximately 27.3 miles.

Last night he was down at 7 and back up at 9. He cried -- and when I say cried, I mean screamed and bucked and wailed -- for an hour and a half until he exhausted himself. Then he was back up about 1:30 a.m. I gave him a bottle to help soothe him and then put him in the car. At least that way everyone else in the house could sleep.

I've had this baby before. Amelia suffered horribly with reflux for a whole year. We walked and walked and walked the floors with her. I don't even want to think about how many miles I walked after midnight in the first year of her life. But I know I don't want to do it again. Today I start calling every possible doc who can treat Alex. I'm taking the first appointment I get. Or staging a sit-in in someone's office if necessary.

Hey, Could We Get A Little Sleep Around Here?

Sleep issues are interfering with my ability and opportunity to blog these days. The boys are struggling mightily to go to sleep at night...but, lucky me, they still get up at the crack of dawn.

Two night ago two of the three fought until almost 11. Then the third was up at 12:30 a.m. Ouch. Last night it was 11 again before we had them all down for the night. Not that they slept all night, mind you. Tonight everyone was asleep by 7:30 p.m., so Jeff and I went out to play with Amelia. By 8:30 p.m., all the babies were up and UNHAPPY. We finally got them all back down by 10 p.m. tonight, but it may not stick, and I'm not expecting any long stretches of sleep tonight.

I used to hope and pray for 5 hours in a row (for me!). Now I've lowered my expectations and I hope and pray for 3 hours at a stretch. At least that's a goal we can achieve most nights. It's partly the reality of three babies and a toddler and partly Alex's reflux issues.

Good thing they are so gosh darned cute!

Sam

Isaac

Alex

An Ode to Caffeine

If you listen to a lot of children's music, like we do, you may have heard "The Coffee Song" by Ralph's World.

It goes like this:

M-O-M-M-Y needs C-O-F-F-E-E,
D-A-D-D-Y needs C-O-F-F-E-E,
M-O-M-M-Y needs C-O-F-F-E-E,
D-A-D-D-Y needs C-O-F-F-E-E,

I love my kids. I love my kids. Gosh, I love my kids.
But I need, what I need, and I need a lot of what I need and that's C-O-F-F-E-E.

It's absolute GENIUS!

Now coffee is not my caffeine of choice, but I'd mainline it right now if I didn't have the option of a nice, cold Coca-Cola. Oh, thank God for Coke!

Last night was rough. My night consisted of a 45-minute nap. Up with Sam for 10 minutes. Down for 20 minutes. Up with Isaac for 10 minutes. Down for 20 minutes. Up with Alex for an hour. Lay down with Amelia's arms glued around my neck for 30 minutes until she falls back asleep and I can sneak out. (That is, thankfully, unusual!) Put Jeff on duty for a couple of hours with Sam, then get up again with Alex and "sleep" with him on the couch for two hours. Sneak another one hour nap while Jeff, the WBHE (World's Best Husband Ever), feeds the babies breakfast and gets Amelia up and ready for the day.

Can you say C-O-F-F-E-E!

Alex is struggling with reflux. I had a baby like this before. We walked the floors for hours with Amelia, and I'm seeing a repeat of it in Alex. He'll sleep peacefully for an hour or two, and then wake screaming. The only comfort is to get him up onto your shoulder, and even that doesn't help right away.

So, I trucked all the babies to the doctor's office by myself this morning -- clearly, the action of a desperate woman -- to make sure it wasn't ears. It isn't. We adjusted Alex's medicine, and I have my fingers crossed that this helps, because the first call for an appointment at a pediatric GI yielded a July 22 appointment...with the nurse practitioner.

JULY? Seriously? And we don't even get to see a doc? I'm pretty sure I can't survive on three hours of interrupted sleep a night for the next two months.

Not even if they put a Starbucks in my basement.

Although that wouldn't hurt. I wonder if they are looking for a new location in my neighborhood...

Reflux Rears Its Head

Today I started Alex on his acid reflux medicine (Zantac). I have been almost paranoid about the boys having reflux because of our horrible experience with Amelia. I have tried really hard to make sure that I am not overreacting to possible symptoms the boys have, because I did not want to put them on any medicine unnecessarily. But, it is pretty clear that Alex has reflux.

Amelia was a "silent refluxer," meaning she didn't exhibit the classic reflux sign -- spitting up. We did get her diagnosed and on Prilosec relatively early, but as it turned out, the medicine wasn't strong enough and the pain she was having led to problems sleeping. We endured months of walking the floors with her at night and frequent nursing (which, we now know, soothed her throat), eating issues that led the doctor to tell me she was under-nourished, and the doctor telling me that some babies are "just difficult."

In the end, we took Amelia to a specialist when she was nearly a year old. She was ulcerated all the way up the back of her throat. I felt like the worst mom in the world! Especially when I thought about all the nights she would cry instead of sleeping, and I realized she was crying because she was in pain.

Alex spits up at every feeding, but not usually a lot. But, he has started to not sleep well. He usually takes 30- to 45-minute cat naps, while his brothers are sleeping an hour and a half to two hours. At night, his brothers are sleeping straight through, but Alex is waking up about three hours before them. And Alex looks tired, poor kid! He started waking up screaming and it would take me 5-10 minutes to get him to calm down. Often he'd go back to sleep on my shoulder, because being upright helped keep the acid down. Then I heard him gulping when he swallowed. That was Amelia's primary sign of reflux, so I immediately called the doctor.

Alex is still a much better sleeper than Amelia, but he doesn't sleep nearly as well as his brothers. Yes, some of that can be personality, but we also know from past experience just how badly reflux can interfere with sleep. In Amelia's case, she didn't sleep through the night until she was almost a year old, and she still struggles to sleep through the night at almost three years old. She just never really learned how to sleep long stretches.

The amazing thing about Alex is that, just like Amelia, he is the happiest baby, even though he has every right to be miserable. Hopefully the Zantac will work its magic and we'll be back to three children who sleep well at night -- even if Amelia still doesn't!