I just had to post about Ariane's knitting. I can't knit.. but I LOVE knitted things. She made the boys the most amazing socks... I LOVE my woolie socks, but socks for little boys are impossible to find! There are actually two pair for Manny, but I think the blue ones are on him right now, as he's in the backyard with Steve. They're superwash wool even!
Steve got this awesome hat. I think my Dad needs one of these!
I'm getting a pair of absolutely gorgeous fingerless gloves (I saw one, but they're still being knitted.) I can't imagine how a mama with a full time job and two kids might have ran out of time to knit. I LOVE you Ariane.
Ok, and here's just some more fun video of the holidays, just for fun:
First, one of the boy's presents from Granny and Pops. Jake LOVES it. They also got them a large therapy ball (thank goodness, because ours got busted). Their gift to Steve and I was a membership to the Creative Discovery Museum. WHOOHOO! We actually used it yesterday and they had a blast.
And, NOWHERE else will do for Jake, not even his very very favorite places. I actually made the mistake of telling him where we were going a day in advance. Sheesh at the meltdowns! I won't do that again.
And lastly... Jake's latest food obsession. Don't you just love the way he says 'sushi sandwich'?
Ok, that's all for now. BTW. I truly appreciate all the friends who follow my blog and offer us support whenever we've had a rough time. Some of you call or write me every single time I post, and you just don't know how much that means to me. I don't know what we'd do without the people who are interested and involved on a day-to-day basis. So many friends and family members called, texted and FB'd on Christmas day (sorry that we were in the woods and couldn't reply, we love you all and heard everyone). Hope everyone has a great new years celebration.
The "pressure cooker" of the holiday season is almost over. Again, its no secret that I'm a bit of a scrooge, but, since get-togethers that revolve almost 100% completely around gift exchange and blatant consumerism with less emphasis on simply being together and getting to know each other go very much against our ideals and beliefs, it can be grueling. However, I was very disappointed that we were unable to make it to Mamaw's get-together, especially since it was her first one without Papaw. Unfortunately, myself and both boys were very sick during that weekend, and I actually ended up at urgent care with a myriad of ailments the day we were supposed to be at Mamaw's. The boys healed quickly, and I am still on the mend, but we managed to have a beautiful holiday.
Santa came to visit one day early, on the morning of the 24th. The kids LOVED their train as you can see here:
A friend of mine, a grandmother herself, told me the other day, "You are a family now, make your own traditions that fit your lifestyle and beliefs, it doesn't always have to be the way 'grandma used to do it.'" She's enjoying seeing her own children and grandchildren begin their own traditions. I think she's a special lady for having this attitude. We have our own beliefs, but just like everyone else we just want to be with people who are accepting and respectful during this time. This was our second year at Kevin and Ariane's house for Christmas, and, since nobody threw up this time, it was awesome. Christmas day both families (we missed you Donovan!) spent communing with nature with a trip to High Falls State Park. Because of the copious amounts of rain that we have received lately, the waterfall was an awe inspiring experience. A stretch of river that is dangerous on a normal day (any waterplay in this area is strictly forbidden) was a death trap. Absolutely gorgeous and an experience I'll never forget.
Although Manny only slept a few hours each night, which made me tired and grumpy, I was so glad to spend those days with our friends. I think it will be this way for many many years to come (if they'll have us). Thanks for having us, Carithers Family.
The kids have had a great holiday. They have received some really really nice gifts. Both Steve's family and the Carithers understand and respect our "toy rules", knowing that its not just me being a horrible nasty "mommy dearest" in making these rules, but that its just us trying to do what is right and that its important to what we are trying to teach our children as well as their developmental needs.
After a couple of days to recuperate, my best friend in the whole world is, as I type, on her way here from St. Louis. We've been friends for 16 years and have been through hell and high water together. We usually get to see each other about twice per year, but due to well, life, its been almost a year and a half. I can't wait, and I'm about to jump out of my skin waiting for her to get here.
We'll probably do nothing but watch kiddies on new years eve, since a babysitter is out of the question, but Katy the door once they go to sleep! Happy New Year!
I'm actually very very happy with how today went, despite the unimaginable situation that we encountered. The visit to Santa was completely impromptu. I thought about sending this as a letter to the editor (thats why I mentioned neither boy's name), but I probably won't. No use stirring the pot in this weird little small town.
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This morning my 4 year old son came to me and said "Wanna go see Santa." This is a big deal to my family and I, because my son is autistic, and we're not always sure what is going on inside of his head. He talks and has a lot of words but he has a lot of trouble communicating his wants and feelings to us. I didn't even really know that he understood the concept of Santa, or that he could GO see him, even though we try to explain.
All morning he asked. I couldn't believe it. I was skeptical, but I was taking my son to see Santa. I didn't even care about a picture, because we have never been able to get a professional portrait done of him. He simply can't sit still or understand most instructions and gets very anxious in any new situation. Minutes after Walnut Square Mall opened, I headed to Santa's headquarters with my son and his two year old brother. We only had to wait behind one family who was photographing their baby. It took a bit of time, so my son was impatient, and I was getting worried that he would melt down. My stomach was churning with anxiety hoping that this would be a good experience for him as he tried every opening to run to Santa and into another family's picture.
As soon as the family in front of us was finished I said "Its your turn!" and my son flapped his hands wildly and doubled over giggling in excitement. Almost at that same moment, a group of three ladies, all senior citizens, walked up to Santa's entrance. The one in front began banging on the table to get someone's attention, while I spoke to the lady in back. "Oh, please, we've been waiting a long time and my son is getting very impatient, we were here already." Then the ladies proceded to go stand by Santa for their picture. I exclaimed "I told him it was his turn, we were next!" Two of the ladies looked at me like I was a nutbag, while the one I has spoken directly to mouthed "I'm sorry." out of eyesight of the other two. My son burst into tears. He cried and cried while I tried to wait for the ladies to first have the picture made, for them to argue a while with the photographer, and for them to socialize with a friend who walked up.
When it was finally my son's turn, he ran up to Santa, put his head in Santa's lap and sobbed for a second, then pushed him away and ran to me saying "Go home?!" I took him to the car. I wanted to cry and I was very close to it. We were so close to this being a good experience.
While putting my sobbing son in the car and choking back tears, a tiny voice says "Go see Santa?" Really? After all of that, my son was asking again. Usually, once he has a bad experience at any place, he may never want to go back again, and his memory is VERY good. I asked him if he wanted to go back inside to see Santa. He said "Inside, see Santa!" Of course I loaded up two boys again, and not only did we get to see Santa, we got a picture with both boys.
Please be kind to others, and look around and take notice to what you are doing during this holiday season. Speak up if you notice one of your friends being unintentionally or intentionally rude. Never underestimate the importance of an event to a child, and never make assumptions about someone else's situation.
Once again I got up at 4:30 AM, got everything in the car, and picked up a soundly sleeping Manny (guaranteed to sleep through the night if he has an MRI appointment, and no other time), and put him in the car with his pajamas and a sippy of juice. Check in and waiting went well. Only the receptionist decided to bring up last month's visit. I didn't even respond to her, especially since she had just been rude to myself and a terrified looking couple with a 22 month old, also diagnosed with NF1, here for her first MRI.
Manny showed his propensity to tear out an IV line with his teeth once, then, after another was positioned and I was left to hold him down while he screamed hysterically, the nurse showed up and sheepishly told me that the wait would be anouother 45 minutes or so. Ugh. So.. thank the universe for babywearing and my Kinderpack because I scissored Manny between my legs long enough to hook up the carrier in the front carry, put him in, and that way not only could he not reach his IV with his hand, he also couldn't reach it with his teeth as long as I kept my arms in a "hug" position. About 1 minute of that and he was fast asleep. Whew. Once we were called in the doctor and nurses insisted that I put Manny down instead of sedating him while he was still in the carrier, like I suggested. So, he ripped out another line with his teeth, and once yet another IV line was put into his arm, he was finally sedated.
I had a great nap and he was brought back to me, all corpse-like and weird. He woke up pretty well and we went to lunch, then back to Dr. Aguilera's office (the hematologist/oncologist).
Great news! The tumors have not changed one single iota. They have not grown or changed, nor have any more appeared. She wants him back for another MRI in six months (instead of the four she'd suggested before). Hopefully, if that one is the same, we can go to MRIs ever year, instead of so often. This is the best news that we could have hoped for.
Next she sent me off to audiology to see if Manny would cooperate with an audiogram. We were unable to coordinate the hearing exam with the MRI this time, as Manny wouldnt' be able to be sedated long enough. The audiologist did a few tests that we couldn't really complete, as Manny was tired, but she did say that Manny has quite a bit of negative pressure in his ears, possibly due to congestion from a cold, but also possibly due to fluid buildup behind his eardrums. Manny often complains of ear pain and acts like he has an ear infection, though no infection is every found to be present. Its possible that he has fluid in his ears that could be causing an issue with his hearing, hence the speech delay. After speaking to the audiologist, we feel like this is an avenue that we definitely need to investigate.
I made it back home around 5:30. I'm tired but happy with today's appointment. I'm off to try to relax for a while.
My attitude has greatly improved after a weekend with friends and family. Especially yesterday at the market. So many family members and friends have shown up to the Market to visit, even on cold rainy days like yesterday, knowing how important it is to me. I can't believe the support that I've gotten from everybody in this endeavor. Its been hard work, and honestly, I'm looking forward to the end, but I still have next Sunday and the 2 day holiday market the first weekend in December, and even more family have promised to attend and show support, so I'm looking forward to that. The management must like me too, because I was the 'featured seller' in the Market bulletin, and my bags were featured on a "This 'n That" segment Friday at noon on Channel 9!
Manny's MRI is rescheduled for 3 weeks from now. Thursday his OT from BCW came by, and, giving the fact that I still hadn't stopped crying from my mental breakdown on Wednesday, I completely forgot, and Manny was asleep when she showed up, making for a miserable OT appointment. I explained, and promised to be more prepared during the next session. Manny is still attending the pre-school 2 days per week and is doing really well. The teachers seem happy to have him, and he doesn't cry and plays well when he is there.
Jake is doing wonderfully, both in school and at home. We had another meeting last week to discuss him getting occupational therapy at school. The OT denied him saying that the sort of OT that he needs (deep pressure, sensory, balance, etc) isn't the kind of therapy that she's comfortable giving saying "You know how people are these days, they might not understand seeing me roll a child in a run and giving them deep pressure." Ugh, so... you aren't comfortable doing your job. I will continue to do what I can to meet his needs in that respect at home, and more than likely we will pay out-of-pocket again this summer to go see Cindy at Tips.
I'm off to start a new week. I'm hoping that the Thanksgiving shopping rush includes my store this year. I was desperately hoping for a couple of hours of childcare for Manny this morning, but Mamaw just returned from a 2 week stay at my Aunt's house. She seems to be doing well, but sounded tired yesterday when I spoke to her so I didn't ask. My goal today, even with Manny's help, is to do inventory and get my shop in order for the upcoming (*hopefully*) shopping rush, finish some orders that have become a bit late, ship everything that needs shipping, take pictures, and put up listings. In other words, I need to get rid of this sinking feeling that I'm falling further and further behind. Off to get started!
I got everything packed and ready for our trip last night. Steve took today off of work so that he could get Jake on and off the bus and spend time with him this afternoon. The MRI appointment was at 8 with registration at 7 AM, along with the hearing test, blood panel and then a follow up visit with Dr. Agulera (hemi/onc) at 3 PM. We were in it for the long haul today.
I woke up at 4:30 this morning, got dressed, then changed a sleeping Manny's diaper and was in the car by 5 AM. I arrived at the hospital shortly before 7 and went to registration. During registration, while I filled out the mound of paperwork, Manny began fussing and got out his sippy. He had two sips, and I was right there... letting him, when the receptionist said, "If he's a sedate he can't have that." Oh yeah, I thought, and took it away. She sent me across the hall, and informed the receptionist at MRI that he'd drank fluids. They sent us home, because his appointment could not be moved up one hour, they were too full. The nurse from MRI who informed me giggled and shrugged and said, at least three times "Well, at least you'll never forget again." "Like I said before, you won't forget again." I get it, lady, you're sending me home as punishment for not following hospital orders. I was sobbing, and had been since the first receptionist chastised me and asked me "Didn't they tell you? It says here that they talked to your husband yesterday, did he not tell you no fluids after 6 AM?" YES, everybody fucking told me... I'm an idiot. I get it. This is the first time I'v broken down during any doctor's appointment. I cried all the way home, and I'm still upset. I hate this.
Maybe contributing to my "bad attitude" is the fact that Manny never sleeps. On a typical night, he goes to bed just fine, around 8:30 or so. He's no trouble at all to put to sleep. He regularly wakes up around midnight or 1 AM and is awake until 4 or 5 AM. Sometimes he's just awake, sometimes he cries the whole time. We've tried a zillion different methods, he's been checked for ear issues, reflux, and a host of other things. I get a lot of advice on this, and all that makes me sure of is.. we're doing that wrong too. I haven't had a night of this that I didn't end up breaking down for at least a couple of hours in the middle of the night. Steve and I tag-team dealing with him every night. After many nights of this he will usually sleep for a couple of nights all night, making us think.. really? is it over? Then he goes back to no-sleep. The nights that he does sleep, I wake up constantly, wondering if he's OK.. because if he's not awake, then is he breathing? If he sleeps late or naps during the day, I have work to do, or Jake to care for, or something. Sometimes Steve's parents actually ASK to take him during the night, so that we can rest. I'm grateful, I really am. I think the last night at her house wore her down a lot though.
Its wearing on my sanity, laying there with him... feeling him get still, then holding my breath, literally. Is he asleep? Surely he is, he's been up since midnight. Oh gosh, I have to pee/cough/move my foot because its asleep, but I won't. I'll be still... ten whole minutes.. Nope, he's still awake, and I have to get Jake ready for school in 45 minutes. Oh God, make it stop.
Sometimes I have horrible thoughts after night after night of this. I honestly feel sometimes like I've done something WRONG by having children. I should have known. I've never been a happy person by myself, but when I met Steve, it was like the light finally shined into my life. Nothing could go wrong. But now, not only have I created a miserable partner, watching me be unable to bring myself up out of whatever is wrong with me, but I've created two children who seem also to spend most of their time being miserable. I should have known I wasn't capable of dealing with this, and I should have made better decisions. I feel like I've created some sort of black hole and that I should have stayed alone. I don't feel right asking anyone to care for my kids because I can't stand the run-down of how miserable they made the caregiver. I can't even understand why Granny and Pops even want to deal with them. I know they love them, but they have the option to love them from a distance, and thats gotta be too hard to pass up. A comment was made about what hell I put my parents through as a teenager in regards to the trouble I'm having dealing with my own emotions. Does that mean that it "serves me right" that I have disabled children because I was a bad kid? Have I not done anything good enough EVER just to deserve to hear Manny say "Mama."?
I guess whining doesn't really help anything. I was hoping to get everything over with today, and get whatever news it would be. Good news? Will any future appointments with Manny ever be "good news?" I'm afraid that they'll be either "nothing has changed" or "the tumors are growing." Staying the same being the "good news". I'll reschedule all of the appointments, and try this again, and yeah... I won't EVER forget not to give Manny fluids before any of the dozens and dozens of MRIs that he is certian to get in the future.
Manny's evaluation with the Occupational Therapist from Babies Can't wait was Thursday. S.H. stayed for about 30 minutes and asked a few questions about Manny. Honestly, I haven't been impressed with BCW this time around. Its been over a month since his arena evaluation, and now we're set up with an O.T for once every other week.. and she doesn't seem flexible at all with her schedule since she only comes to Dalton about one day every two weeks. In fact, what we really need is a SPEECH therapist, since his speech is the most delayed. Children of Manny's age should have a vocabulary of over 500 words and should be speaking in short sentences. Manny, still, only has a couple of partial words. I jumped the gun when he started saying "car" and made the video. He has not said that word since that day. I suppose I am going to have to start pushing the issue and get him private speech therapy, whether paid for by the State (which we are entitled to) or paid for out of pocket.
I am enrolling Manny in the preschool at the church just a mile from here. It is the same school where we tried to send Jake a couple of years ago and it didn't work out (through absolutely no fault of their own). Even though his birthday is one week past the deadline, I found out from a friend who works there (thanks Holly) that there are only three boys in the two-year-old class, and two teachers. The director said they'd be glad to have him. He will be attending 2 mornings per week for just about 3 hours. It will be great for him to be around typically developing children of his age. I really hope it works out. My stomach churns with every endeavor like this, since I've never had good luck with.. well... anything concerning being a parent.
This Friday evening the Carithers family was supposed to come up for a visit, spend the weekend, go trick-or-treating, put the kids to bed, party like adults Halloween night, go leaf-looking and whatever else we could get outselves into. Friday morning I awoke with a bit of a scratchy throat, but Steve got Jake off to school and I dealt with the five poodles that were dropped off at 6:30 AM. By 7:45 AM I was curled up in a ball sweating and shivering with fever and in pain from head to toe. Yup.. the FLU! I tried to finish the poodles with Manny tied to my back but simply couldn't do it. The school called to let us know that Jake was passed out in the floor, also with a fever. Steve took Manny with him to pick up Jake while I fell asleep in Manny's room (for some reason). He returned and told me the amazing news that Pops was coming to the rescue. Get this, even though Steve's mom was out of town, Pops showed up and snatched Manny for the entire day. I don't really know what would have happened otherwise. Steve's work-day was too demanding for a day off.
So... the entire weekend of fun was called off and I am finally on the road to recovery after a couple of rough days. Jake is off-and-on feeling better, Manny is just now getting the flu, and Steve is... well, we're crossing our fingers for him. He took care of me and waited on me hand and foot all weekend. I hope I don't have to return the favor to him under the same circumstances. I'd rather be nice to a well husband. I don't know what I'd do without the amazing men in my life.
Another work-week starts tomorrow. The Parents.com was supposed to come out "end of October".. and I haven't heard anything. I'm getting worried. Its Ok, though, I have a lot of stock and sick kids to take care of. Work can wait.
The weekend was a whirlwind of activity for us. Some wonderful things happened that I totally planned on blogging about, however, I felt it more necessary to spend my time talking about Papaw Doyle.
We arrived home from our adventures on Saturday night, and Steve retrieved the kids from Granny and Pop's early Sunday morning. I called my mom, who had expressed a desire to see the kids on Sunday but got no answer. When I was able to reach her she said that Papaw was doing badly, and was in the SICU at Hamilton Medical center. Just from the information that I had gleaned in the past few days from Mamaw and others, I knew that he must be close to the end. I said I'd come up there, and left Steve with the boys for a short trip to the hospital.
As soon as I got there I was greeted by several family members and told to go on back to his room, as visiting hours were about to end. I steeled myself, conjuring up the image of my maternal grandmother, when I had visited her in the same SICU, shortly before her death, and tried to prepare myself. It didn't work. I asked Mamaw if Papaw could hear me. She said, "Of course!" and leaned close to him and said "Jessica is here." Although he looked like a burn victim due to a bad rash that was being treated, and his eyes looked like tiny little pig-eyes when they opened, he reached a strong hand towards me and wanted to clutch my arm, which he did with amazing strength and said "I love you.. I love you, you know that don't you?" After that he moaned a bit and showed obvious pain. His body looked like some insignificant bumps under the sheets, he was barely there. I wasn't prepared for how this would effect me and I just stood there stunned, nauseated, and I wanted to run from the room, but I didn't. I stood there looking like I didn't care, my best defense. A cousin of mine, just a few years younger than me, entered the room at that point. Papaw all but leaped from the bed to hug her when she came in. His strength those few hours before he died was intense. The effort left him moaning, and I had to sit down.. peeking at him from underneath the IV bags. He said to mamaw, through the oxygen mask "How much longer do I got, this is bad, its too hard on me." I watched him try to kiss Mamaw through the mask every time she got near enough for him to do so. I couldn't stay much longer, told everyone that I loved them then went to the waiting room.
Stuff happened after that. I sneaked in one of Papaw's sweet good friends so that she could see him after visiting hours and then hugged her while she cried because she saw him. I talked to family, I told stories that weren't relevant to anything, and we all giggled about some stories about cremation. I didn't want to leave Mamaw, but she was behind closed doors and I needed to get back to my children who I had hardly seen all weekend.
Manny isn't sleeping anymore, but I feel kind of stupid complaining about that.. so lets just say that I got about 2 hours of sleep that night between thinking and parenting. I was laying in bed when mom called and left a message that papaw had died about 11 PM, about 8 hours after I left the hospital. I talked to her a bit then slept. I called mamaw and dad a few times over the next few days and tonight we went to visitation.
I opted to bring my children to visitation. I know that death is handled REALLY differently in different regions of the USA. But I have been to a lot of southern open casket visitations and I had an idea about how my children would react. Jake was thrilled to see all of his grandparents in one place. Pops and Granny went with us. He ran up to Mamaw. I wasn't really expecting what came next as he tried to jump on tiptoes to see what was inside the casket. He saw Papaw and his expression changed a bit, then he decided he would go sit with my mom instead. That was all. Manny also saw Papaw's body and waved at him. I had similar experiences as a child, and I think that this is healthy. Others might disagree, but.. well.. we do the best we can.
Is Death worse than Birth in America? Most people know that I am a birth advocate, and believe that birth is natural and that we shouldn't be tortured, frightened and otherwise poked and prodded during birth (dont' get me started). Equally, I believe that death is another part of life that is similar to death in that.. it can be painful, it is scary, you want your loved ones near you (or not), it is private, it deserves respect and, once it is over, the pain goes away and you are left with bliss. These two parts of "life" are so similar. Why is it that, in this society, we remove the loved ones and the comfort and support from this part of life.. just so that nobody feels discomfort, except for the person dying? I was once told that I shouldn't talk about my childrens' issues because it made others uncomfortable. Does that mean that we shouldn't hold the hands of the dying and of the ones giving life because it makes everyone else uncomfortable? Rubbish. It is VERY hard, and I didn't do as good of a job as I wish I could have holding Papaw's hand.. but I tried.. and I will think on it for the rest of my life. Once upon a time women gathered around a woman during her birth and did everything they could to ease her through transition, and once upon a time EVERYONE gathered around a dying man and hugged and kissed and eased him into the great beyond. I think that everyone did the best that they could to do that for Papaw.
Papaw's funeral is tomorrow. Steve will watch the kids while I go. I'm fine, by the way, and we don't need anything. Papaw is at peace and Mamaw's life will begin a new chapter, I think. She is healthy and full of energy and will find a way to help others in a way that will leave the rest of us in awe, I am sure.
(ETA) Steve has a notion that people start to worry about their "legacy" when they get older and what sort of memories they leave behind. I can understand this, especially since I don't believe in an afterlife, that our rewards ARE here on earth, and that the only thing we leave behind is who we were and the impression we made on people. Papaw has nothing to worry about. His legacy is set in stone. When I was little he played with me, and I don't mean he threw a ball for a few minutes or that he played peekaboo from his chair in front of the TV. He downright PLAYED with me. For hours. On rainy days we would play "redlight, greenlight" in the basement. On sunny days he'd set up a baseball game with cousins or family members, or he would help me practice my shooting until the backyard should have probably been declared a health hazard due to the number of lead pellets. He was a huge part of my childhood, and I'll never forget that. Papaw was a schoolteacher, and touched the lives of hundreds and hundreds of people. His 90th birthday was standing room only, and attended by a couple hundred people. I can't imagine what his funeral will be like. I hope they have a big room.
Today Manny and I visited Aflac Cancer Center and Blood Disorders Service of Children’s Healthcare of Atlanta and saw Dr. Dolly Aguilera. I'll try my best to reiterate what she said. Manny screamed most of the way to Atlanta, and whined, yelled, cried and tried to escape the room throughout most of the visit. I would have very much have liked to ask more questions, but as it stood, I had to make the best use of time by asking the poor woman to repeat herself several times so that I could hear what she was saying.
Dr. A asked a lot of questions, the usual ones. She went over the significance of the spots on Manny's brain as well as the tumor on his spine. The spots on his brain, aside from the largest one, she referred to as "bright spots" and said that these types of spots will often be brighter or even fade in subsequent MRIs. She is most concerned with the tumor on his thalamus, the part of the brain that controls a person's personality as well as being a gateway for other parts of the brain to communicate with the rest of the body. Should this tumor begin to grow then treatment would be necessary. Should this happen, Dr. Reisner, the neurosurgeon, would be consulted to see if the tumor could be excised, or surgically removed. If not, then other treatments would be explored.
Children with NF1 have a higher risk of cancer and leukemia. Tumors over the size of 5 cm have an even greater chance of becoming cancerous. Manny's spinal tumor is 1.8 centimeters. If a child with NF1 gets cancer, then treatment options are limited because they can not be exposed to radiation, and are especially sensitive to many chemotherapy drugs. Ironic, eh?
Dr. A wants Manny to have MRI's every THREE OR FOUR MONTHS. What?! That did come as a blow to me. Dr. Reisner had previously mentioned getting an MRI in nine months, then yearly. Thats a lot of sedation, contrast dye and stress to pump into one little guy. Dr. A has recently joined the Aflac Cancer Center's team and came from a group in Chicago that has one of the premier NF1 clinics in the nation. She seems to have a TON of knowledge about NF1 and her interest and knowledge of the disease definitely goes beyond the blood, tumor and cancer boundaries. I am glad to have her as one of Manny's doctors, but this type of thoroughness is well.. a lot to take in.
Dr. A wants to keep an eye on the tumor on Manny's spine (the largest) for fast growth or changes that might mean cancer. Luckily, this tumor is not putting pressure on the spine or any of the soft tissue surrounding it. If it does begin to cause pain or pressure, it too would have to be removed or treated.
Dr. A also told me that getting Manny's eye exams every 6 months is extremely important. Tumors of the optical nerve, liche nodules and other things that could threaten Manny's ability to see may sometimes be quicker diagnosed by an ophthalmologist than by an MRI, or vice versa, thus saving a patent's sight.
We discussed my concerns with Manny's hearing. Although I KNOW that he can hear some things, and even responds to commands when his back is turned to me, he seems to not hear everything. His limited speech sounds much like a deaf person.. nasally. His word for "milk" being a very throaty "nnnguh", etc. Granny told me today that she and Pops were "testing" his hearing by making loud noises behind him, and, being the parents of a child born profoundly deaf, she is concerned about his hearing as well. Although the function of Manny's eardrums has been tested and no abnormalities found, Dr. A's response to what I told her was, "Yes, that is extremely concerning." Luckily, during Manny's next MRI, they will be able to do a very in-depth test of his hearing that will actually test how his brain is receiving signals. This is great news to me, to be able to know if he is hearing well, or if his lack of response is more of a social delay, like Jake exhibited near the same age.
Dr. A also wants to do a blood panel to check Manny's organ functions and for other abnormalities. This will also be done during the next MRI, which will be scheduled for next month. The risks involved in so many MRIs are, of course the risk of sedation, and the risk of kidney damage due to the contrast dye. We will be doing the next MRI next month, but I would very much like to discuss the frequency of these treatments during the next visit. Three or four MRIs per year is just a lot.
This is the part where I usually sum up how I feel about this particular visit. It was definitely more than I expected. The doctor made it clear that there is a spectrum of outcomes with this disease, but I was kind of made to feel like at least some of these things will become a reality in the near future. I guess I've sort of let myself believe, so far, that Manny's case will be less severe, and that maybe if we ignore these tumors.. they'll go away, and one day we'll laugh about that time they told us Manny has a "brain tumor" as he beats all odds and begins to develop normally. I really have trouble with this "wait and see" attitude that I'm supposed to have. It makes me crazy. I know that the cost of this care will put a greater strain on our family, but what are we supposed to do?
As I was leaving, a man, probably in his late 40's came to use the elevator at the same time as me. He had a badge and was some sort of employee of the hospital. We entered the elevator together. The first thing I noticed were his forearms, which were covered in small tumors that looked exactly like tiny beads, peas, and even regular sized marbles had been pushed just underneath the skin. Maybe 50 of these were visible on each forearm and his hands. Probably 30 or 40 more visible on his face and neck. He was otherwise a normal looking man. His speech was short and curt as I asked him what floor he would go to, and he looked at the ground. I tried not to stare but, of course, my eyes searched for cafe-au-lait spots. He had several on his neck and the top of his head. This man had NF1. It just so happened that he was parked near me so I followed him down the sidewalk and stairwell. He was shorter than me, maybe 5'3" and showed some difficulty walking down the stairs.. just a slight limp. Otherwise he went about finding his keys in his pocket, his parking ticket and going to his car like anyone else. The scene made an impression on me, thought I'm not sure I can describe it yet.
I've been grumpy and tired the rest of the day. I really just wanted to write down the facts of the day... I will remember more, I'm sure.
I viewed this video the evening that Dr. Michaels first pointed out Manny's cafe-au-lait spots and familiarized me with the term Neurofibromatosis. It horrified me, and now it inspires me.
Again I've let a month slide by without an update. Manny has his arena assessment with Babies can't Wait. He has been assigned an Occupational Therapist who will (eventually) come to the house to do an assessment. We also set up a bunch of other appointments and hammered out some more details. Luckily, during the two hour meeting, Manny cried inconsoleably and begged to be let out the door. The assessment was done by interview only, not by observation. Really the whole thing was a non-event, more of an organizational meeting than anything else, because Manny already qualifies because he's been diagnosed with global developmental delay by two physicians.
I'm tired because Manny has not been sleeping. About 4 or 5 nights out of the week he will sleep for only about 2 or 3 hours (goes to bed fine and easily and on schedule, then wakes about 1 AM) and stays awake until almost time for everyone to get up, around 5 AM or so. He will do this for many nights in a row, then sleep "most" of the night for a day or two. It is exhausting and I don't even want to go into the thoughts that I have some of these nights. I have read a little about sleep disorders in children with NF1, and it seems to be a common problem. I really don't even want to talk about it any more than that.
On a lighter note, Manny has had an appearance change. I cut his hair. And no, its not because of the rude an uncomfortable comments that I have been getting, mostly questions like "Do you secretly want a girl?" (yes, I didn't cut my baby's hair because I am disatisfied with his gender. Shhh.. don't tell, I dress him up in girl's clothes when we're home alone.) or "Is it for religious reasons?" (um......), or "Well, there's gotta be a REASON. What is it?" (I dunno, its a novelty? Its gorgeous? I'm kind of a hippie chick? why not?...) but I digress. I shouldn't be surprised at the fact that people think they should speak every time a thought enters their head. So anyhow.. due to the fact that it was just becoming a huge pain in the ass, I cut my lil dude's hair. He's even more beautiful than before.
Jake went through a bad spell with school, to the point that we had to go pick him up because he was freaking out the teachers with his gagging and hyperventilating. I discovered that he really needs a longer transition time in the morning, so we get him up and we go play on the front porch for a while to get his blood pumping. This quickly solved the problem. Whew..... his father and I both felt like we'd been punched in the stomach when we got the call, fearing a repeat of his first school experience.
School is still doing wonders for Jake. He constantly is more "conversational" if you can call it that. He SINGS all the time, songs from school and television. He is a genius at remembering the words to songs, much to my delight. This morning I was working and heard an odd noise from the kitchen. I yelled for Jake and heard him say "I stuck. Ayuda me (help me, in spanish)." and I went to see what was going on. I shot this video of him singing the "Wonder Pets" theme modified to fit his situation.
I'm still going crazy with Bratsacks. Even with two people helping me part-time I still sew almost full-time. I got word from Parents.com that I will definitely be featured at the end of the month. Thats HUGE! Luckily I have wonderful support. Between Steve and his parents I'm really able to take advantage of this opportunity. I guess the most heart-warming thing about Granny and Pops has to be the budding relationship between Manny and Pops. Pops even beats Granny to the car sometimes to come pick him up. Pops is the one who Manny runs to when he's upset, and I swear the bugger totally ignores me if his grandad is in the room. Its pretty amazing to watch. We have even more doctor's appointments with Manny in the next few weeks (hematologist/oncolagist) and Granny will be able to get Jake off the bus those days so Steve doesn't have to take off work. She'll also be taking Manny part of the time during a music festival next weekend (he is at a phase where he's next to impossible in public... I remember this stage with Jake...whew), and will get Jake after-school while Steve works and I fly to Austin for a friend's wedding. I try to make it very very clear that we dont' want to take advantage of their help, but they actually seem to love it, and never miss an opportunity to spend time with them. Jake is on fall break until Wednesday, and I thought about planning an outing for everyone on Tuesday, but that was a laugh. Granny is too excited to have both of them on her "regular day."... I guess I'll just have to go on our field trip on Monday. What a blessing.
I guess I saved the best for last. Today I went out to the garage and Manny followed. He went to the van, banged on it and said "cahhhhh!" Huh? really? I actually didn't get my hopes up, simply because, though he tends to say words sometimes, its not consistent. He spent the rest of the day bringing me toy cars and saying "CAHH!" SO proud of himself. I hope this is the beginning of real progress.
Now I must sleep. I'm sure I left a lot out, but thats the best I can do tonight.
The weekend visit with the Carithers family was such a wonderful reprieve. As usualy, we did a whole lot of nothing, our kids were happy just to have each other around, we were happy to have other adults around to talk to, and I was especially happy to have that knot in my stomach that tells me that if I'm having idle time, I should be downstairs sewing. We ate, drank and were merry. We went to the indian mounds in Macon and had a nice hike. I'm really really grateful to have found a close lady friend like Ariane. She's strong, upbeat and positive, and always has something good to say. Thanks for being my friend. Thank you for inviting us down and Happy Birthday Kevin. I hope you had a great one. It was the best celebration that Manny and I could have for our Birthdays as well.
After spending Sunday night recovering from what may have been a slight bug, I worked around the house a bit and sewed while Manny napped. Micaela, the special education teacher, called around noon and reminded me of an IP meeting at the school that I had completely forgotten about. The meeting was in just about an hour and a half, and I was frantic as I had not secured childcare for Manny for that day. I thought of calling Steve's mom, but she was already watching him on scheduled days this week. I called Mamaw's house and got Dad. He INSISTED that I bring Manny over, even though he was sitting with Papaw, who is slipping into a world of confusion as his life on this planet draws to a close, while Mamaw ran errands. I was grateful, and according to Dad, it went well! Thanks for saving my life Dad.
The IP meeting went well. It is a reassessment of Jake's need for special needs services, etc. His delays in speech and consistency in answering questions was discussed. Basically, he is still not "testable" since he will not answer questions on a regular basis. His social skills are lacking, of course. I was so very very proud when they completely skipped the section on behavioral problems, simply stating that Jake doesn't have any. We discussed his placement for next year, and I think what will probably happen will be that he will re-attend the exact same program next year. I see no reason to send him to kindergarten at all, he simply doesn't possess the learning skills, and the teachers agree. We're going to take it slow. Its quite possible that he won't enter 1st grade until he is 7 or 8, and that is just fine with me. The teachers there say that they love him and that he is a joy, and they seem sincere.
Manny had an appointment with Dr. Michaels today. He weighs 26 lbs! He's such a little guy, as Jake was around 26 lbs at one year old. He's fattening up and having a growth spurt. The appointment with Dr. M was simply a follow up and really a non-event and more of an organizational meeting. Since he has all of the medical reports from various doctors right there, he can tell me the next steps and instruct his staff to make the appointments for me. Its really a blessing, as my mind gets cluttered sometimes. He gave his obligatory speech on vaccinations, I declined, and he was supportive of my decisions. He was very complimentary and told me I was doing "a good job." Gosh, I hope so... I just do the best that I can.
Both of my businesses have seen an upswing in activity. I am often frustrated when I have no time to sew because my grooming business has had an unexpected boom in business. I can't actually COMPLAIN though, because money is money, right? I have a wonderful lady helping me with my sewing, and my friend Sam is showing up and learning to do odd jobs with Bratsacks, including some sewing. Today I got an email from the press contact at etsy. He was informing me that one of my items could be featured at Parents.com (of Parents Magazine). If that happens, it will be HUGE. One of the largest parenting magazines in America? I am extremely excited, but trying not to get my hopes up.
I have a very understanding husband to put up with me during all of this. I am pretty much a frazzled, exhausted mess. My patience wears thin and, once he gets off from his own 40 hour (plus 8 hours of driving) job, he is given the job of watching the kids and getting them ready for bed while I either sew or work on shipping and receiving. I really really don't want to be one of "those" moms who is absent because they are obsessed with their job, but I also want to be successful and have a part in providing for my family. I honestly don't think that there's anything this man wouldn't do for his kids. I like to think that Steve and I have a good balance most of the time, and I hope he feels the same way.
The boys in my family continue to amaze and frustrate me and constantly make me crazy. I would like to say that my kids make me laugh a lot, but really, they don't. However, when they do, its good laughter. Jake had me cracking up tonight at the mexican restaurant when I told him to get the spoon off of his head. He put it on his nose, and I said "get it off of your nose" (I was starting to get frustrated) and he grinned and put it on his ear. I was totally sucked in... "get it off of your ear." "get it off of your foot" "get it off of your bellybutton." Maybe not a great lesson in table manners, but sometimes its more important to catch those moments of humor, communication and social participation.
(In the photo above, Jake wears a pair of 18 months pajama pants and an 18 months onesie jumper unsnapped, both inside out, and one fluffy shoe. He is signing "walk" and informing me that he is ready to go walk down the street)
Time to update on the family. I've been working so amazingly hard getting Bratsacks going strong and hopefully prepared for the holidays. I've found a seamstress who helps me finish my bags, and my friend Sam wants to learn some sewing skills, so I've got him doing various odd jobs around the sewing room. Soon, my empire will be complete.. bwaahahaha. On top of record sales with Bratsacks, my grooming business has improved a bit.. so really, I'm just nuts. I definitely have to give part of the credit for my recent business success to Steve's mom, Elaine for giving us the family support and childcare help. Its almost a blessing that we've gone without this sort of help for so long, because we can truly appreciate it and do our best not to wear out our welcome or take advantage. Last Wednesday Steve and I had an impromptu middle of the week date and concert. I can't tell you how much steam we were able to blow off, especially since it didn't take weeks of planning and stress, and just sort of "happened". Thanks Granny.
Monday, also Labor Day, was Manny's second birthday. We took the kids to the Creative Discovery Museum and Manny was a complete mess. Jake wasn't into it either. We came home and Manny continued to exhibit his "terrible twos." He just wasn't feeling well and I don't know what was wrong. It was mostly an unfortunate coincidence, but it made me glad that we didn't decide to have a party that weekend. The fortunate AND unfortunate thing about having children who's birthdays fall on holidays (Jake's is memorial day, Manny's is Labor day) is that most of the time everybody that you'd want to invite has plans already. Birthdays are still hard on my mind these days, and I try hard not to, but can't help thinking about where my kids SHOULD be, as opposed to where they are. My mom called and asked the question "Does he even know that its his birthday." I'm sure she meant nothing by it, but it started the first of several tearful episodes that day.
Later in the day Pops and Granny showed up with a big silver balloon for each boy, and some cash for Manny. We had an wonderfully unexpected shared dinner of leftover chili and fixins, I skipped sitting down right away for dinner to make some (reportedly not-so-great) banana bread "cupcakes" with powdered sugar glaze and we stuck 2 candles in Manny's and sang Happy Birthday while Jake chomped at the bit to blow them out. It was fun and a great birthday celebration for a little guy who was otherwise somewhat under-the-weather.
Jake.. OH goodness. Jake. He loved his first few days of school, but I think once he figured out that it was going to be EVERY DAY? He wasn't so happy. There have been a few days that we have had to literally drag and carry him to the bus. Fortunately, the bus drivers are some sort of amazing angels sent directly from heaven because they give him love, hugs, kisses and just dote over him to the point that he can't resist. Jake can turn down a lot of things.. chocolate, his favorite food, bribery, toys, but actual physical love and kisses... not so much. They also let him push the button to close the bus door if it is a really bad day, a special treat. Despite the fact that he is "whiney" when the bus comes some mornings (who wouldn't be, it comes at 7:15... I'm still pretty whiney at that hour), he always returns happy, and his teachers give great reports of his behaviour. I still haven't managed to get to volunteer, due to my "make hay while the sun shines" business strategy, but I did show up a couple of hours before school let out for the parent-teacher conference and met some of his friends and got a little look into what goes on there. I'm really happy with the program. The most important thing.. Jake loves it and....
He's learning to talk. Honestly, I can care less about a LOT of things that go on at school, but it seems that the intense long hours of socializing with typical children, scheduling, etc , something that is really hard to give him in the home environment, is really starting to effect him in a good way. The other morning Jake walked into the living room and said "There's a blanket on the floor. Did Bree pee?" (we have an old poodle with a bad bladder). Regardless of the subject matter.. that was TWO sentences, and one was a question. I was half asleep and was open mouthed with awe. "What?" I said. "Did Bree pee.. right there?" (the floor was wet from a spill). Wow.. really? I almost couldn't answer because I was so shocked.
Another funnier (and possibly less uncomfortable) example came today. Jake will sometimes turn himself upside down on the couch and kick my arm with his little sweaty feet while I'm working. Its just a sensory thing he likes to do while he's watching TV, but I REALLY don't like it. He was getting into position for this and I noticed and looked at him with my best "mean mommy" face and said "you'd better not." He pulled his feet close to his face and said "Shhhh! feet, be quiet feet, or Mommy's going to freak out." Then he looked me right in the eyes and giggled at his joke. I guess its hard to explain to those who have typical children... but these episodes of typical behavior, and FORWARD social behavior mean so much to me.
Jake still can't answer a lot of questions. "what is your teachers name?" is answered with a sullen "teachers name." Or "What did you do at school today" answered with an angry and annoyed "do at school today!" I know in my heart that he doesn't possess the skills to answer these questions, therein lies his handicap. However, I also know that HE KNOWS that he isn't answering correctly, and that HE KNOWS that he is disappointing us in some way. I occasionally ask "How old are you?" hoping that magically he has, after our prompting and his experience at school, he has finally learned to answer this question consistently, or at all, but that one is a little to hard on both of us. Jake will get upset and angry and possibly tantrum, and I will think about both children, and how old they actually WILL be before they'll have the skills to answer this question. He is becoming aware of his disability, and becoming aware that he isn't like other children his age. What do I do to make this journey less painful for him?
Tomorrow we will head to Kevin and Ariane's house. These amazing people, hopefully soon to be officially the godparents of our children, have invited us down for a triple birthday celebration weekend. Kevin, Manny's and my birthdays all fall close together, so we will leave mid-day tomorrow and go stay with them and have all sorts of revelry and fun, I am sure. It has taken all of my self-control not to tell Jake where we are going, just so that he doesn't throw a rod tomorrow when he gets on the bus. He LOVES going to see them, and we get to sleep in their very nice camper, much to his delight. We can't wait. As always, a visit with the Carithers family will refresh and renew us.. YAY!
Vacation Its the first time I've had time to sit down and write since we got home from Panama City Beach, FL. What an awesome time. I won't say that it was restful; three out of the seven nights that we were there Manny woke up in the wee hours and was awake for 2-3 hours straight, but it was definitely a chance to clear the mind. We invited Kevin and Ariane and their two boys Donovan and Ethan to come stay with us for the first two nights, and what a time we had. Ariane and I went para sailing, everybody played on the boogie board, the kids played in the pool and in the ocean and in the sand and any other time we could be found inside of the condo, making cheap food and drinking cheap beer while the kids ran around and ate and played and did whatever they wanted.
During the Carither's visit we had an unfortunate incident. We suffered a home-invasion, or rather... a condo invasion. Someone or something entered the condo and wreaked havoc. Authorities say that this specific type of activity is localized to the PCB area. I was able to catch some of the horrific event on tape. We were able to put the event behind us and enjoy our vacation.
After the Carithers family left on Monday we enjoyed our time as a family. Before Manny started his onslaught of NO-SLEEP, we managed to all take a big 2 hour nap in the middle of the day. I swear it was one of the highlights of the whole trip for Steve and me. Jake really enjoyed the big swimming pools and learned to hold his breath as well as swim forward a bit in his life-jacket. Steve was very indulgent of my obsession with swimming and snorkeling in the salt-water and often watched the boys while I tried to find waves to ride or wildlife to harass. We even went to St. Andrews State park and I did a little snorkeling by the jetties but there was nobody there and I got spooked by the big jellyfish that I saw.
Gosh, there's so much more to write about, but lets just say that we had a good time, and only got stressed due to the lack of sleep. As usual, Steve let me run around like a lunatic and did more than his share of kid-watching while I worked out my crazy energy. Did I mention that he surprised me with this vacation? I am a very lucky woman, and we have two lucky kids to have such a special dad.
During our vacation I rarely thought about my kids and their medical and developmental issues. However, there were a LOT of children there, and it is very very difficult not to be constantly reminded when hanging out with "typical" kids. An 18 month old saying his first words and walking without falling, a 3 year old that can tell you his name and how old he is (or a few dozen facts about sharks) will stir certain feelings in my heart that I can't explain.
That being said, sometimes, amidst my anger and angst and sometimes well-hidden (except to my poor husband, who absorbs most of the shock, bless him) complete FURY that I have been dealt this hand of cards that was NOT in my plan, I forget to point out again that my kids have super-powers. Manny is Mr. Personality, and unlike Jake, who, for years, had trouble adjusting to new situations or people, will cuddle on anyone that he feels he can trust. And he's simply beautiful and makes people happy everywhere he goes with his smiles and his ability to be just stunning to look at. Jake, who has had to overcome problems with being "over friendly" and jumping upon, tackling and otherwise touching strangers inappropriately has managed, with LOTS of work and learning of self-control, to tone it down and simply greets everyone he sees, often saying "Hi friends!!!" To his delight our condo was on the second floor on a corner of the 16 story building, so there were plenty of passersby for him to greet as they headed for the stairwell. I would say that there were a few thousand extra smiles to be seen (even if a few were a bit uncomfortable and confused) at the Summit that weekend. My kids may be deficient in a lot of things, but not in their ability to love.
School:
Jake's first day of school was Monday. He is, as I probably have said before, attending the Pioneer Head Start integrated preschool class. The class has 9 typical kids and 7 special needs kids, and a special ed and a preschool teacher. He goes 5 days per week from 8 until 1, and is fed breakfast and lunch, learns to brush his teeth, and they even work on potty training. I was really surprised at how much the kids do in one day. I think it is wonderful for him and I adore his teachers. I can't wait to go volunteer for a day, and will probably do that next week. I wish I wasn't so completely overrun with orders during back-to-school time because I am dying to see what they do there and to help out when I can! I have had great communication with Micaela, Jake's special education teacher, so far and I am really happy with this program so far. Steve was the one who did enrollment and volunteered to be on the policies committee for the preschool. I was told that he is the FIRST father to volunteer for this. He also volunteered me to teach a music class (oy vey). As you can see, Jake had to be dragged to school kicking and screaming his first day (check out the sign language for "bus" and "school"):
Manny's Assessment While we were gone I received a voicemail from Jennifer from Babies Can't Wait and returned it on Monday when I got back into the swing of things. I was pleasantly surprised when I found out that she had time to do his assessment that afternoon. I like Jennifer and I think we have a bit in common and I enjoy her company. I had met her before when Jake was 3 and came to do his final assessment with the children's first program, and she referred him to the school system because he was so close to three. The assessment went smoothly because J. is familiar with our situation, with me, and because I am familiar with the questions asked. Manny scored very low on speech (of course, he has no spoken language at this time) and also low on gross motor skills. J will refer me to BCW, there will be a second in-home assessment and he will probably qualify for the arena assessment. After that he will probably have a teacher/therapist come to the house to work with him. None of this was a surprise and it was more of a technicality than anything.
Although I don't really consider the very first BCW assessment to be very complete, it IS just a very basic exam, I was happy to see that his social development didn't show up as delayed.
Anything Else? Hmmm.. other than that.. Jake is sick with a cold, welcome to school, right? Manny seems to be soon to follow. I am absolutely stretched to my limit between 8 dogs to groom tomorrow, 18 custom backpack orders, a booth to stock for Sunday morning, and all of the other juggling and regular life stuff that goes on in between that. I don't want to get sick.
I had an unexpected treat today and was asked by the Tom family to keep Bridget while they went to a loan meeting for a house. They got the loan and made an offer. Nobody ever asks me to babysit, so I was really pleasantly surprised and honored. Bridget wasn't happy about Mommy leaving, but really just needed a nap, which she got in the car while we went to get Manny. Jake was so happy I thought he'd come out of his skin when I met him at the bus with his long-time friend. Our whole family just loves that whole family. I'm so glad that they are our friends.
Ok.. thats all I can write for tonight.. so much for a cool "in conclusion" paragraph.
First, I guess I forgot to update about the hearing exam. The audiologist at Loopers Speech and Hearing used a machine to test Manny's hearing. It went very smoothly and Manny was really cooperative. According to the instrument his hearing is normal. Thats good news.
Today we went back down to Dr. Reisners office. Dr. Reisner showed me the MRI. He said that besides the first tumor, there are several spots that are insigificant but consistent with NF1. Also, he has another significant tumor high on the base of his spine/neck area. This tumor protrudes from the spine however is located outside of the spinal column. At this time the tumor is not putting pressure on his spinal chord or causing any of his issues. In fact, he says that there is nothing visible on the MRIs that explain Manny's developmental delays.
These tumors are presumed to be benign. The only issue would be when/if these tumors grow and begin to put pressure on the spine or other organs. We will see an oncologist in the next 6 months. Dr. Reisner has ordered another MRI in 9 months time, and this will be reviewed by a multiple discipline team of doctors. We want to see if the tumors grow and how fast. There is no way of knowing if Manny will develope no more tumors, a handful, dozens or thousands. Thats just the mystery of this disease.
More than likely Manny will need an MRI every year to check the growth of these tumors and to check for more. I can't remember right now if there was anything else. I'm kind of tired.
On a happier note, last Wednesday Steve came home and surprised me by saying that we were going on a family vacation to the beach! We are leaving Saturday for an entire week. I am very very much looking forward to spending this time with my family and some friends too. It will be a much needed rest.
Jake and Manny's test results both came back normal. This means that they have normal genetic structure, with no deleted or duplicated chromasomes. That, of course, rules out Phelan-McDermid syndrome. It does not rule out NF1 and the diagnosis for that still stands for Manny.
Should Dr. Reisner (neurosurgeon) decide that he wants a gene test for Manny for NF1, for instance if it would affect the management of his case, then she said she can certainly do that, but for now we are relying on a clinical diagnosis. I will talk to Dr. Reisner about that Tuesday.
So for now we are attributing Manny's global delays to NF1, since some children do have severe delays, its just less common. I guess somebody has to be on the "most severe" end of the spectrum. Sigh.
She wants to see Manny yearly, suggests eye exams for eye tumors every 6 months since most children with NF1 who get eye tumors get them around this age. Hmm.. thats about all I can remember at this point.
I am very pleased with the fact that the results were normal. It still leaves a lot of questions unanswered, but at this point, that is OK.
Manny has his hearing test at 10 AM in the morning.
Today I took both boys to see Dr. Kathy Stephens at T.C. Thompsons in Chattanooga. She is a geneticist. It was a relatively simple appointment. After rousting the kids out of bed long before they wanted to be awake, we drove up, arrived at 7:15 AM and and waited in the waiting room for almost 3 hours. Jake was pretty fine with this.. Manny was a little harder to handle.
The Dr. asked a lot of questions, and examined both boys thoroughly from head to toe. After that she left for a little while and came back and we talked about each boy.
First Manny: She gave him a definitive diagnosis for NF1. So there you have it, Manny has Neurofibromatosis Type 1. We could do the actual gene test for this, but there is no real reason for this. If it looks like a duck....
She said that 50% of children with NF1 have learning disabilities, and that it is very rare for children with NF1 to experience global developmental delays or mental retardation. She said that most people with NF1 lead normal lives. This all sounded very hopeful and I was feeling very relieved. Then.. I realized that there was a "but"...She mentioned that Manny is developmentally like a 1 year old, and on some things, even further behind. I knew this, and say it myself all of the time, but somehow it was much harder to hear from a medical professional. So Manny's symptoms are more severe than the average child with NF1 because he DOES have global developmental delays. She recommended a full chromosome test for Manny so that we can see if there is anything else going on genetically. The test will look for deletions or duplications in parts of genes.
Also, she will refer Manny to the Babies Can't wait program. This is something that I have planned to do, however was sort of half waiting until school started for Jake so that I would have some time to take Manny to all of the appointments that will be eminent once that ball starts rolling. She also pushed the issue that we need to get his hearing checked sooner rather than later.
On to Jake: Like everyone else that sees Jake she confirms that he has lots of autistic symptoms, but that he talks a lot and interacts and such. So as usual you get the term "autistic-like". She doesn't share my suspicion at all that the children show signs of 22q13 deletion syndrome. In fact, she says that children with 22q13 almost always have almost no speech at all. However, because of family history of delays she recommended the same test for Jake.
We were sent down to the lab where we waited another hour to have blood drawn from both boys. Manny happily smiled at the technician (who was wonderful by the way) while she stuck both arms. I put Manny on my back and wrapped my entire body around Jake to keep him still while he screamed bloody murder while she took his sample. To my dismay we walked back out to a lab waiting room full of horrified looking 4 - 6 year olds that got to hear his wails.
On the way home I asked Steve to call Dr. Reisners office about the MRI results. He did, and the receptionist told him that Manny had MISSED an appointment on July 15th (the day of the MRI). It turns out that the hospital had instructions to send me straight over to Dr. Reisners office for interpretation of the MRI. I, however, was given the opposite instructions and told to go home and that it would take several days for the MRI to even REACH his office (because well, its across the parking lot right?) and a few more days for him to call me. (They also had instructions to do an MRI of only his spine, instead of spine and brain, which I had to argue with them about while holding a flailing unhappy taped-up baby). So now Dr. Reisner is out of the office for 2 weeks and we have an appointment to go BACK to Atlanta on August 4th, when we can finally know if they found anything on the MRI. I am only to assume that there is nothing life-altering to be found on the MRI, I suppose.
While I was in Chattanooga today Steve went to registration for Jake's school. We found out that Headstart classes start one full week after regular school, so we cancelled our family vacation for no reason.
Last night Manny and I left after dinner and stayed in Atlanta in a hotel. We had a nice time playing in the hotel room, hanging out at Publix and otherwise doing very little. I had a hard time getting him to sleep but he finally gave up around 10:45 PM.
I got up around 5:50 this morning and got everything packed up, woke up a very sleepy Manny, and headed to Scottish Rite hospital. I had to be at registration at 7 AM and that went smoothly. I was then sent to radiology where I filled out more paperwork and waited. A mom who was there with her son helped me navigate some of the paperwork. "You sound like you have experience with this," I said. She said that her son was 6 years old and had numerous MRIs. When she said that I noticed cafe au lait spots on his neck, as well as a bump under his shirt at his breastbone. "NF1?" I asked. She said yes. We didn't' get to talk any more as they were called back.
We didn't have to wait too long before we were sent to a "sedation" room. Manny was extremely unhappy about the blood pressure cuff, the O2 saturation sensor, and the gown. He was quietly fascinated, however, by the actual placing of the needle for the IV. After one vein blew in his left hand, it was on to the right hand. He stopped crying about the tourniquet long enough to sit in wide eyed silence while the actual sticking was done in both hands. Then horribleness ensued when they taped the little splint to his arm and taped his fingers to it. I was left for about 20 minutes with a hysterical thrashing baby. I pretty much used all of my strength to hold him down and to keep him from tearing the IV out with his teeth. I was actually grateful when they sedated him. I watched him go to sleep then left for a walk. About three hours later he was returned to the room on a stretcher and still sedated. He woke up just minutes later, groggily had some juice and potato chips, and we were sent home.
No results yet. The MRI will be sent to Dr. Reisner and we will have some results next week. Maybe. This was an MRI of the brain and spinal cord with contrast imaging.
I liked all of the staff at the hospital. Everyone was very friendly, something you don't find as much at "grown up" hospitals. I sat in the room with my earphones in playing with my iphone so that I couldn't hear the other disgruntled children. I don't know how the people who work there can stand it. Once again my trip to Children's, especially the neurosurgery area, makes me realize that, at least so far, we are lucky.
Jake stayed home with his dad and Granny. Steve's parents moved up here this past weekend and Elaine has already taken them off of my hands Tuesday morning so that I could work and stayed here last night so that Steve could go to work in Alpharetta this morning. She kept Jake until 4 PM today, which gave me a chance to straighten up the house and cook dinner when I got home. I am so amazingly grateful for her, because without her help in the past our only "guilt free" options were either for Steve to take a day off of work or for me to take Jake with me to the appointments. She has had so much fun with the kids that she is going to come get them tomorrow so that I can sew. I have my much anticipated debut at the Chattanooga Market on Sunday and her coming to help means that I can go to bed tonight and not stay up until 2 AM sewing. Yay! I don't think that she has spent a day without seeing the kids since she got here on Saturday. What an amazing blessing to our family to have this kind of love and support for us. Its so very good for the children too.
When I got home there was a mysterious box at the door. Some of those crazy Phishhookers have gone and sent us another care package. A giant box of crayons and coloring books and a toys-r-us gift certificate for the kids, yummy bath stuff for me, a copy of the Phish show in Asheville (the one we missed a few weeks ago.. isn't that cool?), and a six pack of rare out-of-season Bells Brewery Two Hearted Ale for Steve (I get one... too). Thanks so very very much for such a cool package. It came exactly at the right time.
Here's a video of Jake with his new crayons. Check out his new favorite word (I have NO idea who he learned THAT from) at the very end. Somehow when he obtains a habit it is already well-established before it begins... Oh well... I hope his teachers are understanding.
We are all happy to be back together as a family tonight. Jake is happily crayoning, Mom and Dad are going to have a beer, Manny is tired and laid back and playing in his squeaky shoes (a gift from me that I found in the hospital gift shop). Hopefully the news will come quickly and it will be good.
Yes, yes I did. I can't believe that I haven't blogged for almost a month. I guess I have been taking a break from everything....
In short, nothing has happened on the medical front with Manny at all. He is scheduled for an MRI in a couple of weeks, and I was assured by his doctors that it is alright to wait. I have managed to put my faith in them, and try not to worry myself stupid. Meanwhile I have been taking the boys on outings almost every day, well... at least until the past week, where I have been trying to work a lot.
I went to the various musical events with a lot on my mind, and have had a lot of experiences since I last wrote, and a combination of all of my experiences has left me somewhere in between a state of happy acceptance, and a state of intense angst, anger and despair. I alternate between these two extremes from moment to moment.
I can't believe how fast the summer has gone. I noticed only last week that Jake will be beginning school so early as August 7th. I was not prepared and scheduled our big family vacation the week after that, so we had to cancel. Maybe under different circumstances I would take him out of school, but he is already one of the "special kids" in the integrated classroom. I want him to make connections and be "integrated" as much as possible. A lot of people have trouble understanding why I would cancel our MUCH looked forward to vacation with a large group of friends for a silly first week of preschool, but things are different for us. Manny:
Manny continues to make progress and has learned a lot of sign language. His speech is pretty much nonexistent, and the words that he does use are almost unrecognizable to anyone but his parents. His motor skills are still that of a child about half his age. He is a sweet and funny kid with a lot of personality and a lot of frustrations. I was so amazingly grateful for the huge outpouring of love and prayers for him when we found out that he had a brain tumor, although I am almost embarrassed by the fact that his "brain tumor" seems to be "no big deal" in the short term, and that we received so much charity when really, its just going to be part of our lives, and we aren't facing an immediate devastating year(s) of surgery and treatment and recovery. Well.. that may come later..... To be honest, I was hoping for answers, for a cure, for surgery that would cut whatever was making my kid all messed up out of his head and make him "normal." That just isn't the case. He is a classic case of regressive mental illness and all we can do is wait and see how bad it will get, or how badly we overreacted....
Jake:
Jake can delight me or make me insane.. sometimes in the same moment. I am so proud of his ability to navigate everyday life and adapt. His speech improves, though you have to listen SO hard to really understand him, and sometimes I'm the only person who has practiced hard at speaking his language. Even then, I have days where I just DO NOT get what he is saying. He speaks in riddles.
He has spontaneously begun the process of potty training, which is very surprising to me since he still seems to not care if he is wet. If I remind him every hour he will pee in the potty but if I forget he walks around wet. He still has not pooped in the potty which gets messy since I let him go around diaper free, if not for any other reason than to save laundry and money.
The Family:
Steve works hard all week and I stay home with the kids and try to work. His parents are moving up here this weekend and supposedly Steve's mom is going to start helping me with the kids a day or so per week. It would be a great help, but I'm not getting my hopes up yet. On the weekends we go play. Jake experienced his first kayaking trip on the Hiwassee river. Well, not really a whole trip, but I picked him up at the upper end of the camping area and we floated to the take-out. He was at ease and it was really cool. I can't wait to take him down the entire river... probably in the spring.
Me? Do you want the "I love my kids, I am so blessed" version or the "I feel like a prisoner and a slave to my situation and I'd do anything to get out of here" version, because I am capable of both. I feel a lot of pressure. I try to internalize a lot of my worry, but it just comes out in outbursts of yelling and anger. If I'm playing with my kids and family I feel like I need to be working and if I'm working I feel like I need to be spending time with my family. The cycle of guilt is really starting to get to me. I need to be doing more with Manny... getting him into early intervention and all, but I am so tired, and honestly, I wonder what good it will really do. Jake begins school in one month and maybe I can find some sort of balance then. I can be honest and say that I am really only happy when I escape from my kids for a few hours or when I am out and about WITH my family, playing and having fun. Everyday life, chores, work, therapy, doctors appointments, homemaking... I dread the days when that is all that is in store because there is just so much, and I never accomplish what I feel is expected of me.
I know very very well that I have no right to complain, and I am reminded of this fact constantly. My bitching is yet another source of guilt for me.
Tomorrow we are taking the kids to the Cherokee Farms Fiddlers convention. Its a 2 night music festival and I am going to be peddling my sewing in a booth. Steve will be in and out but will mostly be helping his parents move, so I'll be on my own part of the time with the booth and kids. I was really excited about challenging myself by keeping both kids both nights just to see how it went, but Steve says he is going to bring the teething Manny home at night and I really can't argue. I am disappointed but he is probably right.. I probably couldn't handle it. I'm nervous and excited about vending at a music festival after so many years and I've worked my tail off just to be able to afford the vending fee. Whether I lose money, make money or break even, I know that it will be a great experience for the kids, and that they'll come home exhausted and happy and begging to "go camper see the music!" again soon.
We are still waiting for an MRI appointment for Manny. I call every day to talk to the "MRI scheduler" at Scottish Rite, but I haven't really gotten anywhere. Tuesday, while Cindy (Jake's OT and Dr. Michaels wife.. in case you're just tuning in) and Jake and I were going hiking down the new walking trail at their offices, Dr. Michaels must have spotted us out a window and came to talk and ask for an update. After being so upset at his office last week, I was glad that he came to talk. He has made sure that "Joyce" at his office will always be available to me to help me schedule things and help me find a contact person at various offices. I am becoming to realize that maybe the lack of an attitude of urgency that the offices have is probably a "good" thing, although I am still making sure that I pester the crap out of everyone and make sure that things move forward.
I'm still very confused about about the "brain tumor." Although that word sounds so amazingly terrifying to a mother.... from my reading I'm wondering if the spot on his brain is anything like the cafe-au-lait spots on his body... just another birthmark? Something we will need to monitor but not an emergency? When I talked to Dr. Michaels last thursday, he said that the Dr. Reisner would be the one who would direct me towards treatment, and mentioned radiation, surgery... That terrified me. Absolutely threw me into a mental tailspin. After talking to Dr. Reisner, I feel a bit better.. slightly less frantic. I still want answers and am reading and watching youtube videos about NF1. It is a fairly common (1 in 5,000 people) disorder and can vary so much from person to person.
Meanwhile, in the past week.. my husband and I have been blowing off a little bit of steam (anybody on my facebook will already be informed). We were very excited about a Phish concert in Asheville, but sold our tickets because we just didn't want to be that far away from Manny. We were in the process of getting rid of our Knoxville tickets and decided at the last minute to leave the kids with my mom and drive for a quick overnight trip. It was the best therapy that *I* have had in years. I love the musical community, all levels of it, big or small.. and the energy that I absorbed from that group of fans will carry me on for quite a while.
When we got home from Knoxville there was a box on our counter that had just been delivered from Charles Vergos' Rendezvous Charcoal Ribs. It was marked as from a "Bea Arthur." We haven't received a package from a dead movie star in quite a few weeks, so we were perplexed. It seems that the online Phish community that I got Steve hooked on when we got married had sent us a huge meal. It was SO amazingly nice not to have to cook for the rest of the day after our little outing... and it only deepened the sense of community that I have felt with these people since the early 90's.
Thats just one example of the huge outpouring of love and support that we have experienced in the past few weeks. Sometimes I feel like its more than we deserve, because, after the initial shock, we are getting the feeling that, just like Jake's neuro/social issues,that this is just going to be a long long road that, while the past few weeks have been the scariest part of the roller coaster, its going to be long hike full of ups and downs. Thank you to everybody that has contacted me, sometimes completely out of the blue... and offered support, to watch my kids, given us gifts of prayer fellowship and tangible things. I never EVER know the right thing to say or the right way to act when someone offers their love and support, so I say thank you now.
Unless Manny's appointment for his MRI gets scheduled for Monday (which is pretty impossible at this point) I am hoping to head up to Bonnaroo to see Phish on Sunday night and stay with a friend up there. I feel guilty for running away and having fun.. but then again sometimes I don't know what the future holds, and I just need to inject a little more of that fabulous energy that I feel when I'm around music and energized people.
It was the possibility of music that made me keep the date open for Jake and Ariannes birthday party for Saturday, even though I had no idea what I was walking into last Friday. When Manny and I went down to Atlanta I was sure as the shoes on my feet that I was looking at brain surgery or doing a lot of research about radiation for my tiny boy. I was "sort of" there when my father had brain surgery about 10 years ago, so I have a tiny bit of experience in that arena... but that can't really compare to the fear that I felt on my drive down there. In the back of my head I was frantically trying to plan a party with food and live music.. with unestimated guests.... I think it was the only thing that kept me from breaking down, screaming and just simply not being able to function on a level that I needed to.
Jake totally knew that the party was "for him" (little did he know, eh?). He ran around counting his friends, and you can hear him doing so here:
"One friend, Two friends! THREE Friends.. TEN FRIENDS!!"
(Elsa and Steve... you can not even imagine how much I am STILL thanking you every day for helping me with this....)
My husband told me not to stay up late... and here I am at 11:20 blogging. He says I'm getting "the crazy eye" from lack of sleep, but at least this time its from going down and wandering around the Riverbend Festival in Chattanooga last night, and not from sitting in a chair crying when I'm supposed to be in bed. I don't think its possible to describe how understanding this man is. He somehow knows that my trips to see the music aren't just excuses to "party" but some sort of therapeutic missions that I can carry with me for months on end, and he loves me enough to work with me on going to see shows. I love him so much.
I love all of my boys so much.
P.S.... due to popular demand.. I am working on changing the name of my blog.
