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Liam’s Fifteenth Month Home

You have been acting a bit off yesterday and today. In the past two weeks when you get excited you throw your left arm back stiffly with the hand cupped upwards. Now in the past two days you have been doing it almost constantly. Yesterday your right eye wandered out a bit and today. Today you have been clenching your left hand with your thumb inwards. Your occupational therapist was also concerned. As the morning wore on you started stumbling a bit more. You are walking with a stiff left leg. You keep trying to run and we thought at first that was the cause for the odd gait. You have also been very fussy the last few days. We called your neurosurgeon. He had us go to the hospital for a quick CT scan. You didn’t like getting the scan since they swaddled you to the table. You don’t like to be restrained. At least we didn’t have to sedate you. Your CT looked fine. He said that sometimes with brain injuries your progress can have these ups and downs. That if you don’t feel well or there are other stressers like emotional stressers this can happen. This past week your dad was out of town, so that may have caused enough emotional strain to have this backslide. We are going to have an EEG next week to make sure of no seizure activity. All week I haven’t really heard you say “da da.” Today when your dad got home you said “da da.” I think you are starting to get it. These are the spoken “words “(or word approximations) you have: da da, ma ma, bbrober (brother), bellwee (belly), de (dog), and Uh uh (uh oh). You have recently had a bit of language (spoken and sign) explosion lately. Seems the last time you had a big milestone jump (pulling to stand/cruise/crawl up stairs) was when you also had that regression scare last summer. Makes me wonder if these happenings are related.

It has been a few days since your CT scan and you are still a bit fussy, but your gait seems better and you aren’t clenching your hand as much. You are getting better at the shape sorter. You can do the circle with no problem. You are now trying the different locations if one doesn’t work instead of just trying to cram the shape in the same place. You can do the stacker like a champ. You are still having balance issues using the step to step up and walk across the balance beam. You are exhibiting quite a temper. Yesterday you didn’t want to finish a task and I made you do “one more.” You got so mad you kicked at the toys lying on the floor then threw yourself down and thrashed around, rolling. You like to do “high five” with everyone in the room. If I ask you for a “high five” you will look around to see who else you can give a “high five” to.

Two weeks later you seem back to more of your normal self. You aren’t clenching your left hand like you were. You are more vocal trying to say “Moon” when you want me to get your Goodnight Moon book. Goodnight Moon is your favorite book. You sign “book” and ask for “Moo.” Today you pointed at the balloon, cow, and mouse in the book when I asked where each one was. You are showing more interest in your Mickey Mouse ride-on car. You actually got on it yourself and made it move about 4 feet forward. You then lifted the seat and sat in the seat. You also got it to move about 2 feet backwards. Grandma came over for dinner tonight. You had a good eating day. You are consistently repeating “Maa ma”, “Da da”, “brahber”, “up” and “uh-oh” when asked. You say “uh-oh” now all the time with two syllables. You use it when you drop/throw things and even when you fall down.
We had your EEG done today. You kept “reasonably” still. We entertained you with our phones and tablet. You were in a pretty good mood through it. You liked it when the light flashed. We saw one of your PICU doctors at the cafeteria afterwards. He seemed surprised to hear that you were walking. We went after lunch and visited the nurses on the PICU floor. They were happy to see you.

We finally got EEG results. There were some areas that indicated that you were moving during the test. Which keeping a toddler still during a test I imagine is impossible. Your neurosurgeon didn’t see any seizure activity or epileptic indicators at this point. So that is good news!

We are finding that you didn’t really understand that “Maa ma” meant me. For now anytime you want someone’s attention especially if you want picked up you say “Maa ma.” You are also not wanting to give hugs lately. The shake of your head indicating “no” seems to be very popular with you these days. You also don’t want to work on shape sorter or any other activity. You will throw you shapes/toys. You don’t want to get in your car seat either. You will throw yourself backwards, arching your back so it is nearly impossible to put you in your car seat. Amazing how strong such a little guy can be. You are trying more and more to run. You are starting to follow directions. When I asked you to put the Swiffer mop away at lunch time you carried it over to the spot I keep it.
 

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Liam’s Sixteenth Month Home

This month started out on a bad note. When out and about running errands, we ran into someone from the place that you got hurt. Fortunately she didn’t see us. I didn’t know how I would react and I didn’t want to react poorly in front of your big brother. It brought back the memory of the last time I saw one of those people. It was a few months back. We were out at a festival, you, your brother and me. We were having a great day, the weather was beautiful and everyone was in a good mood. Then I turned around and saw her. I felt my heart fall. Like someone had kicked me in the chest, I couldn’t breathe for a minute. My head spun a little, and then I felt it; an immense rage started to fill me. She must have seen it on my face for she turned around and ran. Afterwards, I felt nauseous and shaky. There still isn’t a day that goes by that I don’t cry. I try so hard to stay positive and look forward. I know we are lucky to have you. Your recovery so far has been nothing short of a miracle. Nobody at the hospital expected much for your recovery. Not what you are doing by far. We still don’t know what your recovery will be or what your cognition is. We have to just keep hoping. I know I should be happy and thankful that you have been given such a chance and that we have a chance. We keep great hope. We work hard with you to give you all the opportunity that we can to help you get better. But it is hard to keep the negative thoughts out sometimes, the sadness and the anger. I wonder if you are still the same little boy that I gave birth to. We wonder if you will continue to improve. We wonder if you will have any other secondary injuries from your injury. I worry constantly about you. For example the other day when you were in your high chair, you stared out the window…kind of like you were staring in space. The first thought I had was that you were having a pettie mall seizure. I tried calling your name. You didn’t seem to respond at first. So I put my face close to yours and your immediately gave me a giant kiss on the lips. Whew! I worry every night that you will stop breathing. We have a video monitor that I check throughout the night as I sleep. I make sure that you are breathing and that you have moved in your crib. It has been sixteen months and I still worry about you as you sleep.

Today you had a 4 month check-up at your eye specialist. At this point we are still having trouble getting you to keep your glasses on. We patch every day for 2 hours. You are very good for the patching. You sit still so we can put the patch on, then you sit still so we can pull it off. Sometimes you pull it off, but not very often. Your right eye is still off, it is up a little off center. Your eye specialist recommended surgery and patching 4 hours daily until your surgery. Your surgery is scheduled in two weeks. Your Aunt Chris came to visit today. You had fun playing with her. She said you were very smart and of course cute! She asked about your signs that you were making. I told her that you knew sign language. I then asked you “how do you say __ with your hands” for many of your signs. You signed them right away. This was the first time you showed signs when requested just to show them, not to attain something.

Today you blew your first kiss. You are so sweet, you love to be picked up and hugged. You will pat our back when we hold you. Last week you started really throwing temper tantrums. You sometimes arch your back and throw yourself backwards. The new thing you started was banging your head. You will sometimes slap yourself in the face when you are frustrated, then you will kneel down and try to bump your head on the floor. We stay close to intercept you.

Today we had to go to Mott Children’s Hospital in Ann Arbor for your eye muscle surgery. The surgery was pretty quick, but recovery took a while. They gave you some Tylenol and Versed orally to calm you before they took you to the operating room. You never deal well with sedation. You always get really cranky and fight it. I got to walk down into the operating room with you until you fell asleep. You were a bit nervous when you couldn’t see me. In the operating room you got gas to make you sleepy. I left once you drifted off to sleep. They put your IV in at that point while you were sleeping to make it less traumatic. I went down to the waiting room to look for your dad. He was missing. The receptionist told me that he had gone downstairs to get a bite to eat. I didn’t want to leave to look for him. But he had the stroller which had all my snacks, the tablet and my phone in it. I had no way to find him. I found a wall phone and had the operator dial him. He didn’t realize that I didn’t have my cell phone. He came back upstairs and I made all my calls to let the family know that you were in surgery. During recovery you were really cranky and got sick to your stomach. We had them give you some Zofran for the nausea. You slept in my arms for a couple of hours then you felt better. On the way home you felt so good, you ate graham crackers and cheese sandwich. We were at Mott from 9 am until 4pm; long day. Your surgeon said the surgery went well, but it could take up to 6-8 weeks for the eyes to adjust. Then we will know if the surgery was a success. We will not patch for 2 weeks to let the eyes work together. And for about the same amount of time we have to put antibiotic eye ointment in your eye three times a day. You definitely do not like the ointment.
[Photo: 16 Month Recovery Notes This month started out on a bad note. When out and about running errands, we ran into someone from the place that you got hurt. Fortunately she didn’t see us. I didn’t know how I would react and I didn’t want to react poorly in front of your big brother. It brought back the memory of the last time I saw one of those people. It was a few months back. We were out at a festival, you, your brother and me. We were having a great day, the weather was beautiful and everyone was in a good mood. Then I turned around and saw her. I felt my heart fall. Like someone had kicked me in the chest, I couldn’t breathe for a minute. My head spun a little, and then I felt it; an immense rage started to fill me. She must have seen it on my face for she turned around and ran. Afterwards, I felt nauseous and shaky. There still isn’t a day that goes by that I don’t cry. I try so hard to stay positive and look forward. I know we are lucky to have you. Your recovery so far has been nothing short of a miracle. Nobody at the hospital expected much for your recovery. Not what you are doing by far. We still don’t know what your recovery will be or what your cognition is. We have to just keep hoping. I know I should be happy and thankful that you have been given such a chance and that we have a chance. We keep great hope. We work hard with you to give you all the opportunity that we can to help you get better. But it is hard to keep the negative thoughts out sometimes, the sadness and the anger. I wonder if you are still the same little boy that I gave birth to. We wonder if you will continue to improve. We wonder if you will have any other secondary injuries from your injury. I worry constantly about you. For example the other day when you were in your high chair, you stared out the window…kind of like you were staring in space. The first thought I had was that you were having a pettie mall seizure. I tried calling your name. You didn’t seem to respond at first. So I put my face close to yours and your immediately gave me a giant kiss on the lips. Whew! I worry every night that you will stop breathing. We have a video monitor that I check throughout the night as I sleep. I make sure that you are breathing and that you have moved in your crib. It has been sixteen months and I still worry about you as you sleep. Today you had a 4 month check-up at your eye specialist. At this point we are still having trouble getting you to keep your glasses on. We patch every day for 2 hours. You are very good for the patching. You sit still so we can put the patch on, then you sit still so we can pull it off. Sometimes you pull it off, but not very often. Your right eye is still off, it is up a little off center. Your eye specialist recommended surgery and patching 4 hours daily until your surgery. Your surgery is scheduled in two weeks. Your Aunt Chris came to visit today. You had fun playing with her. She said you were very smart and of course cute! She asked about your signs that you were making. I told her that you knew sign language. I then asked you “how do you say __ with your hands” for many of your signs. You signed them right away. This was the first time you showed signs when requested just to show them, not to attain something. Today you blew your first kiss. You are so sweet, you love to be picked up and hugged. You will pat our back when we hold you. Last week you started really throwing temper tantrums. You sometimes arch your back and throw yourself backwards. The new thing you started was banging your head. You will sometimes slap yourself in the face when you are frustrated, then you will kneel down and try to bump your head on the floor. We stay close to intercept you. Today we had to go to Mott Children’s Hospital in Ann Arbor for your eye muscle surgery. The surgery was pretty quick, but recovery took a while. They gave you some Tylenol and Versed orally to calm you before they took you to the operating room. You never deal well with sedation. You always get really cranky and fight it. I got to walk down into the operating room with you until you fell asleep. You were a bit nervous when you couldn’t see me. In the operating room you got gas to make you sleepy. I left once you drifted off to sleep. They put your IV in at that point while you were sleeping to make it less traumatic. I went down to the waiting room to look for your dad. He was missing. The receptionist told me that he had gone downstairs to get a bite to eat. I didn’t want to leave to look for him. But he had the stroller which had all my snacks, the tablet and my phone in it. I had no way to find him. I found a wall phone and had the operator dial him. He didn’t realize that I didn’t have my cell phone. He came back upstairs and I made all my calls to let the family know that you were in surgery. During recovery you were really cranky and got sick to your stomach. We had them give you some Zofran for the nausea. You slept in my arms for a couple of hours then you felt better. On the way home you felt so good, you ate graham crackers and cheese sandwich. We were at Mott from 9 am until 4pm; long day. Your surgeon said the surgery went well, but it could take up to 6-8 weeks for the eyes to adjust. Then we will know if the surgery was a success. We will not patch for 2 weeks to let the eyes work together. And for about the same amount of time we have to put antibiotic eye ointment in your eye three times a day. You definitely do not like the ointment.
 

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Liam’s Seventeenth Month Home

You have been trying to bang your head into me or the floor when you are frustrated.  Most of the time when toddlers do this, the experts tell you to just  ignore it.  But with you we can’t, for a hit to the head could be quite detrimental to you.  We gently restrain you from banging your head and try to distract you. 

Today we celebrated your birthday with the family and friends.  It was a beautiful, sunny day in the 70’s.  You didn’t really understand about opening your presents.  You would tear one open and then want to play with it.  We got you a crab sandbox.  Your brother, I think, likes playing in it more than you do.  You were sitting in my lap when opening your presents.   Every time we opened a present, I would say thank you. After a few presents you said “thank you” after I did, almost perfectly. (Side note to this day 10/3/13 Liam still has not uttered the words “thank you” again).

It has been just over two weeks since your eye muscle surgery.  Yesterday was the first day we have patched since the surgery.  Your eye doctor wanted us to wait 2 weeks after the surgery to start patching again.   You are now supposed to be patching for 4 hours in the morning.  Today and yesterday we only did 3 hours to build you up. 

This morning during occupational therapy you got to write on an Etch-a-Sketch.  You were holding the pen perfectly.  You mimicked your OT’s vertical strokes.  She was so proud of you.  Lately you are going through some really bad separation anxiety with me.  Today you said “ball” three times.  The first time was nearly perfect.  You are trying more and more to mimic words that we say to you.  Sometimes you do the sing-song for the word, others you do an approximation and once in a while you say the words so clearly.  In the last case then you won’t ever say the word again.   You have really good static balance now.  You can squat and inspect something for several minutes before you straighten back up to standing.  Just a month ago you weren’t able to squat but for a second or two.  And many times your left leg would angle in under you instead of the proper squat form.  You like to kick at a ball outside.  You are dominant in kicking with your right leg, although sometimes you will kick with your left. 

In the past few days you have been vocalizing more and more.  You are now saying “more” and “help.”  Sometimes you will say “more” when you mean “help” but if I ask you if you want more of something (while using the sign) you will shake your head “no” and then I will ask if you need help (using the sign) you will repeat “help.”  So we will need to continue to use signs with the words to help you clarify.   At nite nite snack I was holding a piece of food in my closed hand.   I asked if you wanted me to “open” my hand.  You did the sing-song “open.”  I kept waiting and repeating the “O” sound to you.  You then repeated the “O” back, over and over.  Three days ago you put a “p” on the end of your pronunciation of “up.”  You have been saying “uh” for “up” for quite some time now.  Today I got you a new pair of shoes.  Until today you have been wearing a high top shoe to help stabilize and support your ankle.  I bought you a pair of sandals since it is summer.  You really had a hard time wearing them.  You kept tripping.  I finally took them off and put on your regular shoes.  Your favorite books right now are “Goodnight Moon” and “Tractor.”  You are getting better at animal sounds.  You say more of a “moo” for cow, whereas a few ago you would say “voo” for the moo of a cow. (Side note:  As of 10/3/13, four months after these notes were written you are back to your old ways of saying “voo” for a cow instead of “moo.”)  The animal sounds you now know are fish, cow, sheep and snake.  Today and yesterday you did awesome wearing your glasses.  You kept them on almost all day long.  Even if they needed adjusting you would reach up and try to adjust them yourself.  You still aren’t very good about wearing them while in your high chair or car seat.  Today you played in the sprinkler with Tommy for the first time.

You said “wa wa” today for “water.”  After I changed your diaper I asked you to take the wipes and changing pad and put them away for me.  You picked them up and took them over to their bin and put them in.  That was the first time we had asked you to do that.   You love to be outside and will get really grumpy when we bring you in.  You are now able to climb up both of your slides on your own, although we still hover closely in case you lose your balance.  When you slide down you land on your butt.  We need to get you to land on your feet at the bottom of the slide. 

You rode your tractor ride-on today during OT.   It was the first time you were able to push it forward with your feet while riding it.  We went to a festival in town today.  You were afraid of the noise of the rides at first.  We tried using ear plugs, but you threw a fit and pulled them out.  I don’t know if your dislike of the ear plugs is a typical toddler thing or if it is because you have to wear them during your MRI’s.  After about 15 or so minutes you settled in.   We were out late since Tommy wanted to watch the fireworks.  We watched them from the parking lot.  I figured that noise would be just too much up close.  You went to bed at 10:30 pm.  On the way home Tommy fell asleep in the truck but you stayed awake. Your favorite words that you are currently using are “up”, “uh oh”, “ma ma”, “more”, “help”, and “off.”  The signs you are using are “more”, “all done”, “bye bye”, “night night”, “bird”, “music”, “shoes”, “hat”, “fish”, and “help.” You are starting to nod “yes.”  You are squatting well and often inside when you are playing.  When you are playing outside you tend not to squat.  You sit to play. You are still having trouble stepping up and down from a balance beam or step. 

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Liam’s Eighteenth Month Home

You are still banging your head against me and slapping yourself when upset.  You also try to bang your head on the floor.  This behavior has escalated in the past two days. 

You are still having rough nights. Last night for example, I went to bed at 1am since I was up doing paperwork.  You woke up at 1:45 a.m. and proceeded to stay awake until 5:45 a.m.  You would cry and as soon as I came into your bedroom you would stop.  So I don’t think it was a pain thing.  I tried rocking you and you would appear sleepy and then right when I thought you were falling asleep, you would start to point at things and try to talk to me. 

You are saying a few new words now.  You just started to say “wa wa” for water, “ball”, and “pop” when we bring bubbles out.  You are really following instructions well.  We can ask to go get something and put it away and you will.  However, you still aren’t pointing out things when asked in books

Lots of temper tantrums and screaming today.  I think maybe we may have spoiled you somewhere along the way.   Who’d have thought that would have happened.     You are starting to “gallop.”   You can climb to the top of both of your baby slides and get into sliding position.  We still hover around you and make sure you don’t fall.  You land on your butt at the bottom of the slide.  We are working on having you land on your feet.  You don’t like being put in your crib at any time of day for any reason.  Changing your diaper and dressing you is becoming quite the chore.  You scream and fuss.  Then you roll over to your belly and stick your butt up in the air so that we can’t change you.  What a stinker!  You will scream at me if you don’t get your way.  You are still trying to head bang for attention when you want your way.  You are only doing it to me, nobody else.  You are signing “car” and you are isolating an index finger sometimes when signing “fan.”  You are using your left hand more and more now.  You are even able to use pincer grasp with it sometimes, although your index finger is still weak. 

Today when we went to leave grandma’s house you blew her kisses.  Tonight before bed in your crib you lifted your butt up into the air like a bridge and then did two somersaults (note: as of today 10/7 you have not done another somersault). 

When you had your bath you wanted a toy boat and you said “boa” for ‘boat.”  For the last week you have been good about leaving your glasses on.  In fact sometimes you adjust them to get them to fit better.  Words you are currently saying are ball, up, uh-oh, help, more ma-ma, da-da, frog, sock, and shoes.

Today is your brother Tommy’s 8th birthday!  After all of our hard work with your glasses, today we lost your glasses.  We were out shopping with your brother Tommy, he had birthday money to spend.  When you got up from your nap I realized they were missing.