I've been wanting to blog about our recent trip to Shriner's but I really didn't know how to react. I cried for a while and was really upset...so upset I really haven't talked to many people about it. Now I'm ready to tackle this new hurdle just like we have all the other ones....we can do this!
Here's a little history first...
*Kaleb was born with severe foot deformities (shocking...I know)
*his right foot had dislocated bones and was diagnosed with "congenital vertical talus" (CVT)
*his left foot did not have any dislocations but was still very "deformed"
*Kaleb was in serial casting for 6 months to help turn them back the correct way.
*After casting Kaleb had surgery on his right foot where his achilles was cut and a pin was put in through a minor incision to hold bones together. This was when he was 6 months old. This was to fix his CVT.
*he was given ankle braces after the surgery but told to only wear them when he began weight bearing (almost a year later).
*Kaleb had another surgery on both legs to lengthen his tendons to release his feet down.
*since his tendon lengthening his feet have gotten a lot better but his left foot has been the worst so when he stands up or cruises along something he is walking on the inside of his leg/ankle. His right foot (the one with CVT) has been doing pretty well.
So we go to Shriner's for a second opinion on his left foot to see if anything could be done to correct his problem with it. Kaleb had x-rays done and then we met with their Ortho doctor. He showed us the x-ray of his feet and damn...it looked like his x-rays from when he was born. His left foot's bones are actually in line and doing really well (despite our concerns and his PT's concerns). Then we look at the right foot which was supposed to have been repaired when he was 6 months old. He says, "his right foot still has CVT".
I told him, "but that's the foot that he had surgery on". I thought maybe they got the feet switched around on the x-ray..but nope. It was clear as day. His bones in his right foot were all jumbled, like a tangled mess of developing bones. This isn't something that can just be fixed with casting or braces or therapy. It has to be fixed surgically...again. It's not an optional surgery.
I was devastated. As soon as the nurses and doctor left the room I just cried...trying my hardest to keep the tears in because I really hate doctors seeing me break down. I couldn't wait to get in the car because I needed to cry, I had to cry.
Now what do we do? The doctor told us there are two types of surgeries to fix CVT. One of them is new and minimally invasive which is what Kaleb had done at first. This was created by a doctor in St. Louis who is now a pioneer in the world of CVT and travels all around the world to teach other orthos how to do this surgery. The other surgery is a major surgery requiring two large incisions to put all his bones and tendons back together with several pins and around 4 months of being in casts. We agreed to do the surgery and were given paper work so we could get clearance from FIVE of Kaleb's specialists (to allow him to have surgery given his other systems are in good shape).
I left Shriner's planning out my week and how I was going to go to five different doctor's offices and make sure they fax their paperwork back to Shriners, along with planning a birthday party and many other doctor appointments and testing.
Then I posted in a CVT group on FB about what happened. As I was talking with parents on there I found out that our Ortho did not follow the exact steps for this newer minimally invasive surgery. Children are supposed to be put into braces with a bar across for 23 hours a day for up to 2 years. This was never done.
I trusted our Ortho and never researched what he was telling me when Kaleb was 6 months old because I had no reason to not believe him. Why would you follow a new practice but not complete the steps? I also talked with others who's children's first surgery did not work either and most of them traveled to St. Louis to be worked on by the pioneer of this new technique. And to my surprise, he is part of that FB group and he has reached out to me about reviewing Kaleb's x-rays and treating him.
What would that mean? Multiple trips to St. Louis and years with a bar between his feet.
I still have not decided what we will do. I still haven't even given Kaleb's doctors their paperwork for clearance. Either way Kaleb's development will be hurt because of constant casting or bracing. He's been doing so well...standing and cruising along couches and benches.
It's all so scary, my son will be able to walk and now I have to make the best decision to make that as easy as possible for him because...lets be honest...he already has factors working against him in order to walk. If we do the major surgery he will have large incisions and we now know that Kaleb develops larges keloids on his incisions (think of scar tissue bubbling up...that's what it looks like). And he already has these keloids down his stomach and on both of his legs.
What's a mother to do?
1.22.2013
1.10.2013
Adenosine Challenge ::rant::
This morning was Kaleb's "Adenosine Challenge" which happened in the Hybrid Cath Lab at our children's hospital. Everything went really well, no hitches...perfect. He went right to sleep and only needed to be put to sleep with the mask because it was such a quick test.
Everything was perfect, even down to the fact that they have basically been able to rule out Wolff Parkinson White syndrome. It's not 100% but enough to proceed with further neuro testing and possible medications for seizures.
I'd like to think everything is perfect...but it's not. I'm so worn down and tired of it all. Trisomy is hard...it affects everything and changes your life completely. I'm sick of not having any answers and having doctors tell me they have absolutely no idea what is going on. I'm really sick of every test coming back negative. I hate giving doctors Kaleb's medical history and them asking "well what is his blood disorder called" and I really hate having to tell them, "I don't know because the doctors have never seen it before". I'm especially upset at doctors writing in their notes concerns for something and not talking to us about it (apparently TWO cardiologists wrote in their notes that they had concerns for WPW well over a year ago but never talked to us about this). I'm done telling people that I'm glad a test was negative, or that something wrong wasn't found.
If you want me to be honest, I wanted my son to have WPW and I don't really care if that upsets you or shocks people. I'm tired of not having answers. WPW is at least able to be completely fixed in a relatively easy way. The alternative for Kaleb...is not so easy. Seizures are difficult, you never know when they are going to hit..constantly on your toes. Often they start out as simple seizures and progress into worse ones over time. There is no cure for this, only medications. Which, for the medications to work, Kaleb's systems have to be in tip top shape...and lets be honest, they aren't.
I'm tired of hearing "it's going to be okay", "everything happens for a reason", etc. I'm tired of certain people in our lives not being there for us...or hell...not even calling us after something big happens to Kaleb to check on him. I am so tired of it. I'm sick of endless medical bills, doctors appointments, hospitalizations, therapies, etc etc etc. Please don't think if you have said the above things to us that we specifically are upset with you, we aren't, I mean honestly...what else do you say to someone in this situation? "Sucks to be you!"??
Please, go ahead and judge me, try to tell me what I'm doing is wrong and I need to do something different, be my guest, but please know that does not help our situation or Kaleb at all.
I am mad, angry, frustrated, sad, and pissed off FOR my son. He deserves the best...the best medical care, the best people in his life, the best answers, the best everything and when he doesn't get that...I'm not happy. Of course I'm not going to give up on finding answers, but seriously...put yourself in my shoes, or my husband's shoes. It's not easy...
We just want answers and for our boy to be okay.
We may have a lot of "wants" but please know that we are entirely aware of the wonderful things we have. We have a happy family with lots of laughs and fun times. We are a very close family, the 4 of us. We are happy every single day and thankful for all of the wonderful things in our life. So please don't think I'm being ungrateful. I just don't want my son to have to continue to go through difficult and risky testing to get another negative or "normal" result. At what point do you stop and say enough is enough? ::big sigh::
And with that I put on my happy face and continue through my day as if everything is perfect. This year I will focus on being a better person, not letting people or circumstances (whom we cannot control) bother me so much, and be grateful for the friends and family that I do have in my life.
Love,
Erin
12.17.2012
The day I thought my child was going to die
I need to write this while everything is fresh in my mind, mostly for myself. I don't ever want to forget this day, no matter how horrible and gut wrenching it was.
This morning started off normal like every day. I made breakfast for myself and Nolan (really..it was a donut from the night before), and started Kaleb's tube feeding in his high chair. I sat at the dining table next to Kaleb, ate my cottage cheese while he had his g-tube feeding and some baby food by mouth. Everything was fine, Kaleb was happy...we were all happy, my husband was at work. Kaleb blew through baby food pouches and then I gave him some puffs. After that Nolan brought me what was left of his donut. I pulled some very small pieces off of the inside and fed that to Kaleb, nothing out of the ordinary. He had a few pieces and was fine. I gave him two more small pieces and continued reading on my laptop, about mental health in America (due to the recent shooting in Newtown, CT). I turned to see if Kaleb needed more food and he wasn't breathing. He chokes on food more than most kids but he always recovers, he coughs and cries and I freak out and think about calling 911...but everything is always fine.
This time was different. His head was hanging and his face was pale and mottled. I grabbed him and he didn't respond. I picked him up some (he was still attached to his feeding tube so I couldn't take him far) and he still didn't respond. I panicked. I unattached him from his tube (while it was still running...formula all over the place now) and ran with him in my arms to my phone. Snatched my phone up and started hitting his back, still no response...no air...no nothing. His eyes were open and looking at me but that was it. I tried to put him over my arm to hit his back more but he was so limp and heavy I couldn't do it for long. I called 911. While on the phone I put him stomach down on the back of my couch and kept hitting his back and shaking him. The operator transferred me to our local FD and that's when Kaleb came back to me. He acted as if nothing happened. He never coughed, took a deep breath, or cried. I was shaking and hysterically crying with the FD. They asked my nearest cross street and I blanked...I had no idea where I lived. He gave me options of cross streets and I was able to basically answer by multiple choice. I put Kaleb down for a second to put one of my dogs up and Kaleb crawled and acted fine. After I put my dog up I didn't let go of Kaleb. My 3 year old and I sat outside waiting for the FD, and they came with bright lights within 10 minutes.
At their arrival the firefighters and EMTs were more worried about me in the moment than Kaleb. They made me sit down in the living room and all I kept telling them was how sorry I was for my house being dirty. Who knows what I was thinking. They ran an EKG and o2 sats on Kaleb. He was basically fine...though they could only get his o2 up to 91/92...normal is 100. They asked me if I wanted him transported to the hospital...I fought with that. I said no, he was acting fine. They made me sign a paper stating that I didn't want them to transport him and I felt like an awful mother.
As soon as they left I called Kaleb's pulmonologist hoping it would be his actual doctor and not just an on call doctor we didn't know. Of course it was a doctor we didn't know. She was rude and said I should have called 911 before her. Okay, obviously you have a problem reading the history that I just gave to your operator. She told me to take him right away to the hospital.
I felt awful, why didn't I have them take him? I cried for my son and how terrible of a mother he had. Honestly, I know I'm a good mom, but in the moment I felt awful.
My husband rushed home and we took him to the hospital. While there the idea of this possibly not being a choking event came up, I didn't think of that. There has been questionable times of seizures though we have never had any results from his EEGS.
There's no way to know what happened probably, they have run so many tests and they all come back negative....
CT-still all the previous problems but fluid on his brain has not increased
urine cath- negaive
drug test- negative
RSV- negative
lung xray- negative
CBC- all levels were normal
EKG- possible arrhythmia...depends on what doctor you ask
You may have noticed that I said they gave him a drug test. Yes, without us knowing it...they drug tested him. Since I was in the child protection field I understand this in most cases, but they know him. They know he has a huge medical history. No...I did not drug my child and cause him to stop breathing. Because...lets be honest, they don't think he is on drugs.
The doctors spoke with Kaleb's neurologist and he agreed that Kaleb needed to have an EEG (measures seizure activity) while in the hospital instead of the scheduled one we have for January. They are actually going to do a 24 hour EEG so we will be in the hospital a couple of days. He will also be getting a swallow study, which he is due for...in all honesty I dread this more than anything. Finding out that Kaleb could no longer drink liquids in May was a huge blow to all of us...Kaleb loved his bottles. For months we had to hide food from him and couldn't eat in front of him. Today even if we had a snack...we had to hide from him. He has a fierce love for food and it would be a huge blow if they found he was aspirating solids. A part of me already knows what they will find and they will probably tell us he can no longer eat anything by mouth, but I still have to have hope.
Tonight I am at home with Nolan and the dogs and Dennis is at the hospital with Kaleb. I finally stopped crying this afternoon when I kept having to tell the story over and over again to doctors, nurses, techs, and even previous doctors that had once had Kaleb under their care and they were concerned so they came to visit. But as soon as I walked into this house it all came back. I just cried...and tried to hide it from Nolan. I was planning on coming home and going straight to bed. Instead...I cleaned. I did laundry and cleaned...took the trash out...everything. I even cleaned the toilets and cleaned each tile in my kitchen, on my hands and knees with a wet cloth. I don't know why I did that...maybe I'm crazy...especially at midnight.
Nolan: What are you doing mama?
Me: Cleaning and doing laundry
Nolan: Do you need help?
Me: No baby, just keep watching your movie but thank you.
I even cleaned the outer surface of each of our cabinets. Again...Nolan was confused.
Nolan: Mama, what are you doing?
Me: I'm cleaning the cabinets.
Nolan: Why?
Me: I don't know love...because they are dirty?
And really I don't know why. I'm not the clean type...but I needed to clean tonight...this morning. I even found a pool of formula in Kaleb's highchair...of course...I left his feeding pump on when I thought my world was falling out from under me.
I'll keep everyone updated and write even more later...tomorrow...there's more I need to get out. Writing is like therapy to me. Thanks to everyone for the prayers and the friends and neighbors that have offered and helped with Nolan. I don't know what I would do without these people.
This morning started off normal like every day. I made breakfast for myself and Nolan (really..it was a donut from the night before), and started Kaleb's tube feeding in his high chair. I sat at the dining table next to Kaleb, ate my cottage cheese while he had his g-tube feeding and some baby food by mouth. Everything was fine, Kaleb was happy...we were all happy, my husband was at work. Kaleb blew through baby food pouches and then I gave him some puffs. After that Nolan brought me what was left of his donut. I pulled some very small pieces off of the inside and fed that to Kaleb, nothing out of the ordinary. He had a few pieces and was fine. I gave him two more small pieces and continued reading on my laptop, about mental health in America (due to the recent shooting in Newtown, CT). I turned to see if Kaleb needed more food and he wasn't breathing. He chokes on food more than most kids but he always recovers, he coughs and cries and I freak out and think about calling 911...but everything is always fine.
This time was different. His head was hanging and his face was pale and mottled. I grabbed him and he didn't respond. I picked him up some (he was still attached to his feeding tube so I couldn't take him far) and he still didn't respond. I panicked. I unattached him from his tube (while it was still running...formula all over the place now) and ran with him in my arms to my phone. Snatched my phone up and started hitting his back, still no response...no air...no nothing. His eyes were open and looking at me but that was it. I tried to put him over my arm to hit his back more but he was so limp and heavy I couldn't do it for long. I called 911. While on the phone I put him stomach down on the back of my couch and kept hitting his back and shaking him. The operator transferred me to our local FD and that's when Kaleb came back to me. He acted as if nothing happened. He never coughed, took a deep breath, or cried. I was shaking and hysterically crying with the FD. They asked my nearest cross street and I blanked...I had no idea where I lived. He gave me options of cross streets and I was able to basically answer by multiple choice. I put Kaleb down for a second to put one of my dogs up and Kaleb crawled and acted fine. After I put my dog up I didn't let go of Kaleb. My 3 year old and I sat outside waiting for the FD, and they came with bright lights within 10 minutes.
At their arrival the firefighters and EMTs were more worried about me in the moment than Kaleb. They made me sit down in the living room and all I kept telling them was how sorry I was for my house being dirty. Who knows what I was thinking. They ran an EKG and o2 sats on Kaleb. He was basically fine...though they could only get his o2 up to 91/92...normal is 100. They asked me if I wanted him transported to the hospital...I fought with that. I said no, he was acting fine. They made me sign a paper stating that I didn't want them to transport him and I felt like an awful mother.
As soon as they left I called Kaleb's pulmonologist hoping it would be his actual doctor and not just an on call doctor we didn't know. Of course it was a doctor we didn't know. She was rude and said I should have called 911 before her. Okay, obviously you have a problem reading the history that I just gave to your operator. She told me to take him right away to the hospital.
I felt awful, why didn't I have them take him? I cried for my son and how terrible of a mother he had. Honestly, I know I'm a good mom, but in the moment I felt awful.
My husband rushed home and we took him to the hospital. While there the idea of this possibly not being a choking event came up, I didn't think of that. There has been questionable times of seizures though we have never had any results from his EEGS.
There's no way to know what happened probably, they have run so many tests and they all come back negative....
CT-still all the previous problems but fluid on his brain has not increased
urine cath- negaive
drug test- negative
RSV- negative
lung xray- negative
CBC- all levels were normal
EKG- possible arrhythmia...depends on what doctor you ask
You may have noticed that I said they gave him a drug test. Yes, without us knowing it...they drug tested him. Since I was in the child protection field I understand this in most cases, but they know him. They know he has a huge medical history. No...I did not drug my child and cause him to stop breathing. Because...lets be honest, they don't think he is on drugs.
The doctors spoke with Kaleb's neurologist and he agreed that Kaleb needed to have an EEG (measures seizure activity) while in the hospital instead of the scheduled one we have for January. They are actually going to do a 24 hour EEG so we will be in the hospital a couple of days. He will also be getting a swallow study, which he is due for...in all honesty I dread this more than anything. Finding out that Kaleb could no longer drink liquids in May was a huge blow to all of us...Kaleb loved his bottles. For months we had to hide food from him and couldn't eat in front of him. Today even if we had a snack...we had to hide from him. He has a fierce love for food and it would be a huge blow if they found he was aspirating solids. A part of me already knows what they will find and they will probably tell us he can no longer eat anything by mouth, but I still have to have hope.
Tonight I am at home with Nolan and the dogs and Dennis is at the hospital with Kaleb. I finally stopped crying this afternoon when I kept having to tell the story over and over again to doctors, nurses, techs, and even previous doctors that had once had Kaleb under their care and they were concerned so they came to visit. But as soon as I walked into this house it all came back. I just cried...and tried to hide it from Nolan. I was planning on coming home and going straight to bed. Instead...I cleaned. I did laundry and cleaned...took the trash out...everything. I even cleaned the toilets and cleaned each tile in my kitchen, on my hands and knees with a wet cloth. I don't know why I did that...maybe I'm crazy...especially at midnight.
Nolan: What are you doing mama?
Me: Cleaning and doing laundry
Nolan: Do you need help?
Me: No baby, just keep watching your movie but thank you.
I even cleaned the outer surface of each of our cabinets. Again...Nolan was confused.
Nolan: Mama, what are you doing?
Me: I'm cleaning the cabinets.
Nolan: Why?
Me: I don't know love...because they are dirty?
And really I don't know why. I'm not the clean type...but I needed to clean tonight...this morning. I even found a pool of formula in Kaleb's highchair...of course...I left his feeding pump on when I thought my world was falling out from under me.
I'll keep everyone updated and write even more later...tomorrow...there's more I need to get out. Writing is like therapy to me. Thanks to everyone for the prayers and the friends and neighbors that have offered and helped with Nolan. I don't know what I would do without these people.
Notice the writing next to, "Today's plan". I thought this was funny...so simple...yet something people take for granted every single day.
ED fun
Nolan...eating crackers. He had to hide from Kaleb so he turned away to the hall so baby didn't see. Nolan...please know you are the best big brother ever.
12.12.2012
Life Saver
As most know, Kaleb is feeding tube dependent for all nutritional needs. He can eat some foods by mouth that are thicker, however if they are too thick he will choke and on two occasions recently he stopped breathing for a short time. And I'd rather not experience that ever again.
Kaleb has always loved food and dearly misses his bottles. He has finally calmed down so he doesn't become hysterical every time he sees a baby or kid with a bottle. Thank goodness, that was a rough time!
With everything he has gone through he has shown how smart he is. He knows that his formula that used to be in his bottle, is now in his tube that hooks up directly to his stomach. Over the months that he has been g-tube (gastrostomy tube) dependent he has learned different ways to get the formula out of the tube and in to his mouth, which is a no no for Kaleb. He has learned he can open his med port (the hole where you put all medications) and suck out what's in the tube. Also disturbing is when there is no flow into his stomach he can open the tube and suck out stomach contents. Yeah...it's gross.
The past couple of weeks have been especially difficult because he has learned how to detach a part of the tube by biting on it a certain way and there is no cover for this area on the tube. We have tried everything. Tying blankets around the tube, tying wipes around certain parts of the tube, and even went to Lowes and bought cable keeper cords which fit nicely over the medical tubing...but my lovely child has figured out how to even pull that off. I'm at a loss for what to do.
Because of this Kaleb can only be fed by tube when I am right next to him to stop his chewing. Feeding him in the car was awesome but I can't anymore because most of the roads I drive on are highways and it's happened a few times where I have to pull over on the highway with cars zipping past us to I can stop his flow and clean up the mess.
The annoying part of having to be right next to him during all of his feeds is that his feeds take ONE HOUR to finish. His GI doctor wants him to have FOUR feeds a day...that is FOUR hours out of our day. Not to mention I have to keep his hands busy...I'm running out of things to do with him during these hours. What the GI wants really doesn't happen, ever...with the amount of time that has to be in between feeds and the length of the feeds...we just don't have enough time in the day. And don't even get me started on continuous feeds at night...not even going there. He does however get as much nutritious food by mouth that I can safely get him to eat, as possible.
Today I took a chance and tube fed him in the car...really I was desperate because he really needed to eat. So I tried to hide the cords as well as I can and even covered them with the cable covers from Lowes to make it harder for him to chew it...and then I had to pull over.
Kaleb has always loved food and dearly misses his bottles. He has finally calmed down so he doesn't become hysterical every time he sees a baby or kid with a bottle. Thank goodness, that was a rough time!
With everything he has gone through he has shown how smart he is. He knows that his formula that used to be in his bottle, is now in his tube that hooks up directly to his stomach. Over the months that he has been g-tube (gastrostomy tube) dependent he has learned different ways to get the formula out of the tube and in to his mouth, which is a no no for Kaleb. He has learned he can open his med port (the hole where you put all medications) and suck out what's in the tube. Also disturbing is when there is no flow into his stomach he can open the tube and suck out stomach contents. Yeah...it's gross.
The past couple of weeks have been especially difficult because he has learned how to detach a part of the tube by biting on it a certain way and there is no cover for this area on the tube. We have tried everything. Tying blankets around the tube, tying wipes around certain parts of the tube, and even went to Lowes and bought cable keeper cords which fit nicely over the medical tubing...but my lovely child has figured out how to even pull that off. I'm at a loss for what to do.
Because of this Kaleb can only be fed by tube when I am right next to him to stop his chewing. Feeding him in the car was awesome but I can't anymore because most of the roads I drive on are highways and it's happened a few times where I have to pull over on the highway with cars zipping past us to I can stop his flow and clean up the mess.
The annoying part of having to be right next to him during all of his feeds is that his feeds take ONE HOUR to finish. His GI doctor wants him to have FOUR feeds a day...that is FOUR hours out of our day. Not to mention I have to keep his hands busy...I'm running out of things to do with him during these hours. What the GI wants really doesn't happen, ever...with the amount of time that has to be in between feeds and the length of the feeds...we just don't have enough time in the day. And don't even get me started on continuous feeds at night...not even going there. He does however get as much nutritious food by mouth that I can safely get him to eat, as possible.
Today I took a chance and tube fed him in the car...really I was desperate because he really needed to eat. So I tried to hide the cords as well as I can and even covered them with the cable covers from Lowes to make it harder for him to chew it...and then I had to pull over.
Pulled the cable covers off, coiled up the tubing....commence chewing.
How much tubing fits in Kaleb's mouth? We are going for a record here.
Sliding the tubing through his teeth...just like floss. Really, really thick floss.
Oh and now we have dance moves with the tubing.
I do believe his tubing is his best friend. Sigh....
12.11.2012
No sleep for the weak
After about 45 minutes of never ending screams I had to wave my white flag. But I told Kaleb that if he was going to stay up, then I was going to take pictures of him...and lots of them.
Baby blues...
Who will I hit with the remote first?
We are learning to not hit the doggy with the remote...be gentle.
Only posted this because it's a little funny that I was taking a picture of our stockings when the Raising Hope family were wearing theirs, festive I say!
Before I got hit in the head for the first time tonight with a remote....
.....here's the second time.
My now 70lb P U P P Y
Kaleb's favorite thing...books
....even if they are upside down.
Love this little man to the moon....
And he loves his books.
Basically as soon as he got out of his bed he was happy and smiley...and hitting me a lot. He fakes so well...I'm pretty sure he knows he can use his special-ness to his benefit. You little stinky butt, I'm on to you.
Goodnight!
[sn: Nolan has been asleep since 6:30pm... hallelujah]
[UPDATE on sn: Nolan is no longer asleep. Five minutes after posting this he came out of his room and will now not stop crying. Why do I put them to bed early again? Oh and now he just thew his cup at the dog...I must go rescue someone]
Sleep
Kaleb has been pulling this thing for a couple of weeks now where he will cry and cry for hours if you let him at bedtime. It is driving me crazy! He can get out of anything pretty much because of his medical issues. With Nolan we really just let him cry it out...which in all honestly didn't happen that often.
But now with Kaleb...could the crying hurt his heart? Did he pull his g-tube out? Is his leg caught? We have a camera right on top of him but the smaller things are pretty hard to see. Not to mention he chokes himself and it makes it obviously hard to breath for him...which breathing is already an "issue". We recently found a bump on the back of his head, possibly related to his hydrocephalus so this makes me worry even more. His neuro believes he may even be having migraine type headaches so if I let him cry it out...does that make his head hurt more? Ugh...
It has only been 34 minutes and I'm pretty sure I'm going to cave soon. We both could use a good snuggle anyway.
12.01.2012
New Camera
I went ahead and bought myself a Christmas present...early. That's okay right? I bought a Canon t3 Rebel DSLR camera. It came with two lenses and I'm having so much fun testing it out. Obviously I'm no professional but I'd like to think I could be one day. So the learning begins...
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