"Do not be afraid, for I am with you.
Do not be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand". ~ Isaiah 41:10
I haven't had too much to post about lately but I do have a few new pics of Dominic. He's progressing nicely. Still no crawling or walking, but he is moving all around. He can go from sitting to lying down to flipping over onto his belly and pushing back up to sitting. He can even get up to all fours on his own! He doesn't stay there long, but he's figured out how to do it! He loves to give kisses, and by kisses I mean he devours your whole face and covers you in slobber. But it's sweet. He babbles all the time too. He does say "Dada" now and while I don't think he's actually trying to say "I did it", he says it ALL THE TIME. So, he's trying to say something and it comes out sounding exactly like "I did it". It's hilarious.
His Kissy face
I didn't have the video camera, but here is a series of photos taken within about 2 minutes to catch how much this kid is moving!
Up on all fours on his own!
He's really turning into a typical toddler (well, except for actually "toddling" around). But we've gone out to dinner a few times over the past few weeks and he's grabbing menus and tossing them off the table. Grabbing and eating crayons. He sneaks the salt shaker a starts shaking salt everywhere. He even figured out how to get a box of candy hearts open on his own! I've realized I really need to keep my eye on him all the time. He might not be walking or crawling everywhere, but he's moving and is just as curious as any other 17 month old.
My little valentine
It's really fun to see Dominic and Mitchell interact these days. Because Dominic is stronger and more mobile, Mitchell has a lot more fun with him. He loves to tickle him and sort of wrestle around with him. And Dominic thinks Mitchell is the funnest thing ever. It's really sweet. I was worried for so long that Mitchell would resent Dominic for all the attention he got the past year, especially with his surgery. But he doesn't at all and actually adores him. I'm sure they'll fight as they get older, but for now they're very fond of each other.
Brothers :o)
We're all still battling colds around here. It seems like we all have colds for the entire winter season. I'm ready for Spring! Excited we're almost into March! Since we were all a little under the weather after a busy weekend visiting family, I decided we were going to have a pajama party day. We're staying in pajamas all day and we made a big bed on the living room floor out of pillows. We're just watching movies, reading books and relaxing all day. Sounds good to me!
We've had a busy few weeks! Between a couple illnesses and busy therapy schedules, we are as crazy as usual. We've also grieved the loss of my grandmother and Mike, Dominic and I flew to Kansas last weekend for the funeral. Mitchell had fun with his cousins and Aunt and Uncle. It was very hard but the service was beautiful and a wonderful tribute to the amazing woman my grandmother was. It was also very nice to spend some time with my mom's side of the family.
Waiting for our plane
Mike and Dominic at the funeral
Some of the Blow family
The four Blow Sissies ( with cousin Steph filling in for Aunt Nancy)
Dominic is doing great! He's making some great progress with his walking and is taking steps on his own (holding my hands, of course) all the time! He's moving around a lot in his gait trainer and enjoying being on his feet. He's also getting really good and moving himself around. No, he's not crawling, but he probably won't. He does however turn himself around both sitting and on his tummy. I wouldn't be surprised if he started scooting around soon. He's also babbling all the time and has a few words - ba ba (bottle), cheese, hi and bye-bye. No Mama or Dadda yet, he's making progress!
Here is a video of Dominic at physical therapy working on walking/stepping. Yes, that is an ankle weight around his waist. He seems to be looking for a little more input from the ground, hence the reason he likes to jump a lot. The weight gives him a little more of that input and the knee immobilizers keep him from jumping up and down. These are some of the best steps he's taken! But he's not afraid to let Robin know when he's had enough for the day :o)
He's still really fighting the constraint therapy, so his OT has decided to back off a little with that. Instead, we're focusing more on bilateral use. So, rolling and throwing a ball, shaking maracas in both hands at once, clapping etc. His right hand seems to follow his left when he's not thinking about it and when we don't take away the left. He'll hold his bottle with both hands, but try to get him to just use the right and he flips out. So, the ultimate goal is to have him use his right hand as a "helper" to the left and he's doing pretty well with it so far. He's got great shoulder and upper arm strength on his right side, though, and he's amazing at upward facing dog! Sometimes I make him practice yoga with me :o)
In other good news, Dominic is DONE with Clonazepam! After 4 1/2 months of weaning him off, he is officially DONE with it. He is now down to just one seizure medication (Keppra) which he will be on at least until August, possibly longer. Aside from the Keppra, the only other medication Dominic is on is Bicitra for his kidney stones. It's hard to believe a year ago he was on 11 meds, including steroid injections!
Life is still crazy and stressful but it's encouraging to see Dominic continue to progress. He is a happy little guy and continues to bring us joy everyday!
As I've mentioned, Dominic has turned into quite a stinker. Therapy is becoming more of a challange and some days it seems to be a waste of $180 per visit. BUT, he'll get there! I started working a little harder on it at home. He's figured out how to still use his left hand despite being constrained by the brace and covered with a sock. So, I've learned the best way to force him to use his right hand is to tie his left arm to a chair with a scarf and bribe him with yogurt melts. It seems to be working so far!
He even figured out how to get out of this!
We're also still working on standing. He's doing great and even takes several steps when I hold his hands. I'm not sure how long it will take, but this boy will walk!
Dominic's OT has been working with Dominic a little more on feeding because he seems to be having some issues. He appreas to have tounge weakness and has trouble moving food around in his mouth. This is why he has decided to stop eating anything that requires a lot chewing. She taught me some oral exercises to do with him but he may need some more help down the road.
Other than that, a pretty usual week for us. Monday we had surprisingly warm weather and enjoyed a nice winter family walk. Mike and I are looking forward to a date night tonight and tomorrow we are heading the East side to spend some time with friends. Should be a fun weekend!
Another busy week in the Dunlap house. Fortunately, I was lucky enough to have my sister come up and visit for a few days before she starts another gruelling semester of law school. It was so great to hang out with her and she was such a help with the boys.
Dominic had his usual OT with Early On on Monday and this time she brought out another OT to observe along with a vision consultant. I was informed for the first time that Dominic is not only peripherally blind in his right eye, but also his left. This was news to me and something I had not heard before. She said he would have a difficult time walking and going down steps. But that he would have an especially hard time reading. I didn't take it to heart since this woman had never met him and was no neurologist or opthomoalogist. Unfortunately, she was right. We saw Dominic's Opthomologist on Wednesday and she confirmed the same thing. He lost his peripheral vision in BOTH eyes on his right side. Needless to say I was a little upset that no one had ever mentioned this to me before. She said we had probably been told by the neurosurgeon and neurologist, but that when we were told that he would lose his peripheral vision on the right side, it was implied that it was the right side in both eyes, not just one. The optic nerve from each side of the brain splits and is responsbile for different areas of vision in each eye. So, removing an entire hemisphere will remove vision that that side was responsible for. So, basically he can see fine when he looks straight ahead but if he tries to look to his right without turning his head, he will be totally blind. So, that's great. His opthamologist did remind me that this was a down side to the surgery, but that it had to be done to stop the seizures. Fortunately he will not know any different and will learn to compensate. I guess even though I know he's a little delayed, I thought that someday he would catch up and live a normal life like anyone else. I feel terrible for knowingly doing this to him, but I guess what choice did we have? If we didn't stop the seizures, he could have easily ended up a vegetable. I suppose it's the lesser of the two evils.
You can see where the optic nerve splits. The blue is what was removed thus leaving Dominic blind on the right side of both eyes.
Here is Dominic during Early On last week. He LOVES this monkey Linda brings. His right arm is getting stronger each day and he can now support himself solely on his right arm and play with his left.
On a good note, we found out he doesn't need glasses! The last appointment we had with the opthomologist she was leaning toward glasses. But after dilating his eyes and a three hour office visit, she decided his eyes were correcting themselves and glasses weren't needed.
Dominic pretty much dominated the treadmill this week at PT. He is becoming quite a feisty little guy. He's learning to hit and hearing the word "NO" a lot more from me. He also puts up quite a fight when Robin is stretching him during therapy. But with that he's getting stronger and more mobile. He got his AFO on Friday and it should give him a little more support when he's standing/walking.
Dominic's AFO. Short enough that he can move around but gives just enough ankle support
The man eating breakfast rockin' his new footwear
Mike was supposed to be gone this weekend but with all the snow, he's staying around here. Which is a good thing, since I was layed up on the couch all day yesterday with the flu. Dominic may be getting more of a 'tude, but at least he entertained himself in his jumparoo for two hours yesterday so I could nap while Mitchell was at school. I'm definitely looking forward to a low-key weekend at home with my boys :o)
I haven't posted in awhile but I guess I haven't had a whole lot to say (which is a good thing) and we've been so busy with the holidays. We had a wonderful Christmas and New Years and were able to spend a lot of quality time with friends and family. I have some fun pics at the bottom! Now that we are officially done with 2011, we are hoping 2012 will be a much more relaxing, enjoyable, peaceful and healthier year. Mike and I both remember where we were a year ago - in the hospital starting ACTH treatment. So much has happened since then, I barely remember that time of our lives. We were in such a fog and just bogged down with worry, anxiety and fear. It's amazing to see what a different baby Dominic is now.
Speaking of the main man, he is doing great! He is always standing; assisted obviously. But when he's not standing he's rolling and spinning around trying to grab anything he can. He has gone from Dominic the baby to Dominic the toddler for sure (except he's not toddling yet). He's always grabbing and pulling at things, mostly my hair, earrings or glasses. You can tell he wants to move. When he's put into the crawling position, he rocks back and forth but isn't quite sure what to do. His PT and OT don't think he'll crawl but will go straight to walking. I can understand that. It takes a lot of effort from both legs and arms to crawl. But I am thinking he will do some sort of army, one-armed crawl. He doesn't like to sit still anymore.
He's been sort of a stinker lately. He's definitely starting to express himself, especially when he's not happy. We have been doing more constraint therapy at home and at OT and he does NOT like it. He just refuses to use his right hand/arm. He'll just sit there and stare at me while his OT attempts to get him to use it. We've realized he's getting smarter and knows that if he holds out long enough, we'll take the arm brace off. And he's right. So, now he's supposed to wear it 3 hours a day at home. He hates this but mostly because he can't suck is thumb. She said it's a tough age because he doesn't understand why we want him to use the right side when his left one works so much better. But we'll keep at it!
His AFO came in last week but it wasn't the one his PT wanted, so she sent it back and they ordered a new one which should be coming in this week. Tomorrow we see the nephrologist and they'll do some blood work to check on Dominic's kidney stones and how the Bicitra is working and make any necessary changes. We are on month three of the Klonopin wean, which means he's only taking half a dose one a day. So, in about a month and a half he'll be on only ONE seizure med. Ah-ma-zing is all I can say. Other than that, life is back to normal with Mitchell at school, Mike at work and me running Dominic from appointment to appointment.
Life is good. Life is normal. Life is happy. We are incredibly blessed to have made this much progress in the past year. Dominic is a little champ and endured so much always with smile on his face. Here's to a happy and healthy 2012!
Mamma and Bampa with most of their grandkids at the Dunlap Christmas party
We had a busy week! Dominic finally got his tubes on Monday after getting rescheduled 3 times. The anesthesiologist didn't feel comfortable doing the procedure at an outpatient office with his health history. So, we had to have it at the children's hospital. He seems to be doing better and is much happier now that he can hear. The kid never shuts up! He's either squawking like a little bird or babbling. He seems to really love being able to hear himself make noise. The procedure was really fast and we had no problems. I seriously only had time to go to the bathroom before they came out and got me to tell me he was done. Piece of cake compared to his 10 hour brain surgery!
Time for some tubes!
Dominic also got casted for his AFO (ankle foot orthosis) on Wednesday. That will take a couple weeks to come in but should be helpful once he can start wearing it. He is bearing more weight and can stand for awhile with me just holding his hands. But you can see that his right ankle is weaker and tends to lean/slump to one side. So, should help keep his right leg and ankle in correct alignment.
Dominic's new footwear he'll be sporting
We saw the Urologist this week and he got another ultrasound of his kidneys. Stones are still there, about the same size, so he'll have to continue taking Bicitra (which is disgusting and he hates it). But they haven't gotten bigger, so that's good. He said at this point they are small enough that he would pass them. That should be a fun experience should it happen!
He had a great week at PT and OT as well. He did the best he's ever done on the treadmill, really trying to take steps. He even for the first time, tried taking steps on his own while I was holding his hands. His PT said that means the treadmill is doing it's job - teaching him how to walk. He also spends time at home in his gait trainer, but he's not a huge fan of it. It seems to bore him :o) He's not close to crawling, but definitely gets where and what he wants, as you can see in the video below.
His new favorite thing to do
I can stand!
Standing on my own (for a few seconds) at my play table!
The past few weeks we have had quite a few friends and family that have gone through some really tough times. It breaks my heart and I have no idea what they are going through. But I do feel that the past year with Dominic has really taught me more compassion and empathy. I do know what it's like to spend countless hours in the hospital. I do know what it's like to wait in agony to see if my child will survive major brain surgery. I do know what it's like to be up all night with a seizing baby, afraid to sleep because he might aspirate on his own vomit. I do know what it's like to have no hope. But I also know that God is bigger than it all. I've experienced the grace of God in so many ways. And I believe in miracles, because I have my own living, breathing miracle. God allows some really bad things happen to some really great, amazing, God-fearing people. I don't understand it and it doesn't seem fair. But I know that God will never forsake us and He always gives us what we need for each day if we trust Him and give it all up to Him. I am grateful that God used Dominic to break me. I've always considered myself such a strong person, but 9 months ago I was truly broken. Only through the grace of God could I pick up the pieces and be put back together. I now feel like I can empathize with people who are suffering more than I ever could have before; and that is a true gift. I only hope and pray that I am able to use our experience with Dominic to help others who are struggling.
