The antibiotics seem to be working.  Eve is doing much better.  Thursday afternoon and night were still rough.  Lots of coughing and gagging, and she threw up in bed shortly after bedtime.  But by the time I went to bed she had settled down and only gagged a few times the rest of the night. 

Yesterday was much better.  She was still coughing, but not nearly as much.  She was also gagging a lot less.  Last night she settled down to bed right away and only made noises for about 5 minutes.  I didn't hear her coughing until about 6am.  She's not coughing too much this morning and hasn't gagged at all.  Her nose is still running and she sounds more stuffy,  but I am so relieved at the progress she's making. 

lullaby and antibiotics

Every night for 7 years, we have been singing the same song to Eve at bedtime.  Here is the original version:
http://youtu.be/56SOgdbljeU

We replace "baby" with "Evie."  For 18 months, Seamus has heard it, too.  We use his name for him.
It's our own special routine.


In other news, Eve's cold seems to have gotten worse again.  Last night was particularly rough.  She was coughing continuously and eventually vomited twice in trying to clear her airway.  A bunch of clear liquid came out - which was either excessive saliva or the 2oz  water we mixed with her miralax 6 hours earlier.  So, we changed her sheets and pj's (twice) and eventually, she rested comfortably.  Me?  Not so much.  This morning I got her out of bed and as I was putting her in her wheelchair she vomited a handful of mucous.  Green and thick and enough to fill my hand.  Gross and TMI, sorry.

Anyhow, I was positively vibrating with stress and worry.  I kept telling myself some advice that my friend, Ellen, gave me: Don't borrow trouble.  I repeated it like a mantra.  Stop worrying about things that might be and just deal with the here and now.  I can't even begin to tell you where my mind was trying to go.

I decided to stay home with her today and cancel my classes and the babysitter (this is Eve's school break).  I emailed her pediatrician, who called me.  Dr. A told me that because Eve has been sick for nearly a month, it is time to try her on Amoxicillan.  We went off it when Eve was at Baystate because they told us this was viral.  However, because it has been so long, there is a good chance of bacterial involvement by now.  I started to cry because so often I feel very helpless with Eve's symptoms.  It was so nice to be given something to try that will hopefully make her feel better.  So, I'll pick up the Rx by lunch and get two doses in her today.  Hopefully by the end of the weekend she will be feeling better in time for school next week.  I've also given her a decongestant and some Tylenol (in case of sore throat from post nasal drip or headache).  She seems to be doing better now than first thing this morning.  I'm hoping a nap also helps her feel better. I'm planning on napping, too.  Or at least trying to.    

Potty pooper

Today Seamus pooped on the potty at daycare.  I'm sure it was a total fluke, but I think it's wonderful for him to get positive reinforcement and start to connect the potty with what it is there for.  I just can't even imagine having a child that can use a toilet.  I've been changing diapers for 7 years - with double diaper duty for the last year and a half.  It will be wonderful when Seamus is potty trained in the future. 

Seamus *finally* is getting more teeth. I was making him laugh yesterday and when he had his head tilted back I could see that a molar on each side of the top of his mouth has cut through a little bit. One of my challenges with being a parent this time around is not freaking out over missed milestones. Fortunately, the tooth department is the only one in which Seamus has been behind his peers. I really work to not freak out that at 18 months he still only has 4 teeth. I think the two flanking his bottom teeth are also about to cut through any day. He has been a little extra low on patience lately, so that might explain it. Anyhow, here is a few pictures (mostly of Seamus). He seems to be picking up a new word every day. Yesterday, he said "Eeewwww" when I was changing Eve's diaper. Totally appropriate. I was doing an internal "ew" as well.

Eve is doing MUCH better.  She is still coughing, but not as much.  Also, it's not as difficult for her to clear the junk and so she's not retching and gagging as much (if at all). 
She got many adorable Valentines from her classmates (and teachers).  The girl is love.  My little sweetheart.

little helper

When I picked Seamus up from daycare, Katey told me that he had been bringing toys to the 6 month old baby and putting them in her hands.  I told her I was not surprised.  This is something he does for Eve.  He brings her toys, puts them in her hands, and helps her play with them.  He was probably "helping" the baby play, too.  He is a very very sweet boy. 

more info on Eve

While at the hospital yesterday, Eve got some music therapy.  A man came in and played the guitar for her.  He made up a soft song using her name and singing about her smile.  She loved it.  She really made the effort to hold up her head and smile at him.  Then he had her play the guitar with her fingers.  He softly sang some notes, and she tried making noise, too.  I took a quick video.  Unfortunately, you can't hear her "sing" on it. 
Then he even had her strum the guitar with her feet.  She thought that was funny.

Then the neurologist came by with one of the interns, to use Eve as a educational experience.  He went over her reflexes to demonstrate their abnormality.  For example, she still has a pectoral reflex that should only be present in newborns.  She also has reflexes that travel rather than being isolated.  So, if you tap her knee, not only does the knee move the leg up, but her ankle and toes will also twitch.  She also has some reflexes that will cross to the other side of the body.  Then he explained how her extremities have rigidity instead of spasticity.  He showed how to move her arms to tell the difference (steady resistance vs. resistance, a catch and then slow movement).   The intern was super grateful to be able to touch Eve and feel her muscles and reflexes.  He said when he does neurological exams on the kids there, they are usually neurologically normal and that it was great to see the abnormality in person.  I personally love it when med students or training professionals shadow Eve's doctors.  This experience could change another patient's life.  Someone struggling for a diagnosis might get one thanks to this person remembering Eve.  

Eve and I both slept like rocks last night.  After some initial coughing, she was quiet all night.  She woke up happy.  She was coughing and stuffy, but wasn't gagging.  I sent her to school and I think she'll do just fine.  She may be tired, but that's okay.  There's a music program at school today that she will enjoy. 

18 mos. well visit

Jim took Seamus to the pediatrician for his 18 month well visit.  He got a shot and a finger prick...and didn't cry!  Little toughie.  He's doing great.  He's 34 inches tall (92nd %ile) and 26 lbs (74th %ile).  His development is totally on track. He has about 25 words/signs. 

home

We are home.  Eve is doing better.  Big plans for tonight - bath and and early bedtime....for each of us!

Back at Baystate

Last night, Eve woke up retching and gagging on mucous. She was doing it every few minutes and I wasn't comfortable leaving her side. It was pretty scary. She just couldn't seem to keep her airway clear. The triage nurse sent us to the ER. I know it would have been better to go to Baystate, but I couldn't drive her there by myself. She would have needed someone by her side to keep her head down to drain excess saliva etc.  So, we went to the local ER. The tested her for flu (negative), did a chest X-ray, checked her oxygen levels (fine). They also tried some suctioning, but it didn't really help and they were afraid to aggravate the airway.  So, they sent us to Baystate via ambulance. We arrived around 3am and settled in to sleep around 4.

Eve has been doing much better since we've arrived. One of the docs witnessed a retching episode and said that while it is scary, she's doing fine. So, the plan is to send us home today after the pulmonary nurses teach me how to suction her. They will order us some suctioning equipment as well.

Eve's neurologist also stopped by (I love that doctor). He said she looks chubby. :) He told me not to worry about her choking to death on the mucous. He said we would worry if she was not able to gag/retch. Aspiration would be much worse. That's comforting because it so scary when she retches. It's nice to frame that as a good thing.

So, now we wait for her to get over this cold. I'm going back to having a hospital bag packed at all times. I got too comfortable and unpacked that bag about a month ago. Can't wait to get home so we can both rest (and I can get clean).

Strong man Seamus

Seamus has been so funny lately.  When I put him in the van, he runs over to the closed ramp and pushes against it while making straining noises.  I've started calling that his "strong man".  He was doing it at dinner last night and I was able to capture it on video.  It's been hard to take video or pictures of him lately because he always wants to see the image I'm capturing.  So I have to convince him to stay in front of the camera. 

Eve has a (sort of) cough

Eve has a cold and it seems to have settled in her chest.  Because she doesn't have the muscle strength, she really can't cough to clear the phlegm. She weakly coughs with what sounds like a fake cough.  Only it sounds really really junky.  It's actually maddening, because you know that a healthy person could just give a quick forceful cough and clear out the junk.  I just want to be able to cough for her. 

Anyhow, I took her to the doctor yesterday morning to have her looked at/listened to.  The Dr said that there is definitely "stuff" in her lungs and that one sounds worse than the other.  She put Eve on Amoxicillin and said she should be feeling better in 2 days.  I was able to get both doses in her yesterday, so hopefully tomorrow will be better.  She has no fever and is pretty good spirits.  She had a couple of laughing fits yesterday (which wasn't such a good idea because it increased the mucous) and gave her the hiccups. Actually the scary part is when she gets a glob of mucous in her throat and can't clear it.  She ends up gagging and retching, but isn't breathing until she clears it.  I know it's only a few seconds, but it feels like an eternity.  This mostly happens first thing in the morning after she has been laying down all night.   I asked the Dr. if we could give her a medication to help the symptoms and she said that the amoxicillin is the best thing (other than the humidifier we are already using) and that other meds may cause more problems. So, we wait and hope she feels better soon.