Another day, another doctor (this is a long one)

Last Monday we saw the pediatric surgeon and oncologist. The update on the masses in her kidney is as follows: April 24th Kaia had a CT scan. The hospital, not surprisingly, could not coordinate the ear tube surgery and ABR hearing test so she just had the CT scan. They still had to sedate her, but it was “conscious sedation” versus full-on anesthesia which was supposed to be much a lighter level of sedation. We were both with her the entire time. It was really hard watching her little body go into the CT machine. She was “drunk” the whole day Friday from the sedation wearing off.

I had a doctor’s appointment for myself scheduled for later that morning and I was planning to cancel it. However, I thought, what better day to keep her strapped in the stroller than today? Normally I don’t like to keep her restrained when she could be practicing moving her body. But that day she was so impaired. She literally was like a drunk getting behind the wheel that just doesn’t realize how impaired they are. She would try to stand up from the floor and walk and would start keeling over and couldn’t understand why her body wasn’t working the way she wanted. It was dangerous for her and stressful for me. So, I strapped her in the stroller, and I went to my appointment and got that out of the way.

That night we also had a parents night out scheduled, which we were going to cancel because Kaia was still so unsteady on her feet. We realized that most of the time they hold her anyway. She’d be safe and there was no real reason not to go. And we really needed a night for us after the day we’d had. We dropped Kaia off and went back out to the car, which now suddenly wouldn’t start. No warning signs before of hesitant starting. Nothing at all previously to indicate that anything might be wrong. Completely out of the blue it just wouldn’t start.

By some lucky twist, we had jumper cables in the trunk and another nice parent gave us a jump. Thankfully Sam's Club was close by and open, so we spent our date night in the parking lot at Sams Club, Paul’s changing of the battery aided by the helpful cashier’s offer of a wrench loan. If it had to happen, it was actually a good thing that it happened when it wasn’t Kaia and I alone in the car, and that it happened on a night when we had time to deal with it and weren’t in a rush to get somewhere. Even after changing the battery, we still had time for a quick dinner before picking up Kaia, who, as it turned out, had a fine evening as well.

We didn’t hear back from Dr Kidney until right before leaving for the parents night out (after much pestering of his office). He informed us that they saw multiple masses in her good kidney with the CT. They didn’t look like anything he had seen before. His initial reaction was that he recommended a biopsy but since he was on his way to a kidney conference he was going to ask a few other docs there what they thought. He also asked the most ridiculous question – “Does she have any other medical issues?” I was like, “well, you know she has this syndrome…22q13 syndrome…yes it affects the kidneys…”, etc. Unbelievable. You’d think he’d look at her chart before he called us, right? Anyway, he asked if this was common with her syndrome. I immediately jumped on the parents’ message board for her syndrome and searched for any kidney issues besides multicystic kidneys. Hydronephrosis, reflux, and multicystic kidney are all reported. But nothing else. So I posted a question specific to the masses and also emailed the researcher after whom Kaia’s syndrome is named and asked if she knew if any kidney masses had been reported with the syndrome. I copied Dr Kidney in on the email as well as her developmental pediatrician. Dr Kidney told us he’d get back to us early the next week. Dr Development had nothing to add.

Monday came and went. Tuesday came and went. Wednesday came and went. Normally I’d be on the phone hounding a doc who didn’t get back to us. But I really wanted to give him time to check all the resources on his end. And, it was all too easy to ignore this. I don’t really want to think about it being anything serious. I knew the options were to wait and watch the masses or biopsy. Scary thoughts if a biopsy came back malignant because she only has the one good kidney.

Kaia had an appointment Thursday morning with her developmental pediatrician. We asked him if he could be a resource for us in coordinating situations like the one last week with the ear tubes and CT. He agreed that was his role. Kaia’s got so many issues that someone needs to be quarterbacking her care. Someone on the inside of the system. Because no matter how loud I scream, none of these people hear. He left the room and immediately started making phone calls. He was already aware of the kidney situation because I had copied him in on the email I had sent Dr. Researcher regarding if any other kids with the syndrome had experienced these types of kidney masses. He just thought that Dr Kidney was following up on it. He coordinated an appointment for us with the oncologist and surgeon. I realized after speaking with him that we may have questions for Dr Kidney too when we met with these other doctors. However, the magic contact was gone. I was now stuck again with the nurses and once again, was given the run around: “No, their office (the other doc’s) needs to be the one coordinating this”, they emphatically stated. Messages were left, no phone calls returned and a repeat of the week with the ear tubes commenced. I’m so done. I know if we want anything done we need to speak directly with the doc and have him do the legwork. I am so sick of this hospital. I can’t believe that all hospitals treat patients and parents this way. There is only one other option in Indianapolis - another children’s hospital that may or may not be better. Indiana just seems to have such an inbred/nepotistic population of medical professionals. Most are trained instate (who would actually want to move here to practice medicine, after all?), they all know each other, and seem to have the same attitude and training regarding patient care. I don’t hold much hope that the other hospital would be much better.

The bottom line is that Kaia saw the surgeon and oncologist Monday. I had been planning on going to a new support group meeting that meets once a month on the first Monday morning of the month. I had one-on-one childcare set up at the meeting for Kaia and I was really excited to go. I felt a little resentful that the appointment meant we couldn’t attend the meeting. However, we both really wanted to hear the doctors’ opinions and recommendations. I was very nervous about what they might say but I was trying to go into it open to receive all the info and get our questions answered. All this just seemed so unfair. I couldn’t even think farther ahead than the next day.

We saw the surgeon first and he was pretty wishy-washy about whether a needle biopsy would be possible. He recommended a laparoscopic biopsy. That is pretty major surgery. She’d need two weeks to recover – couldn’t do any therapies. Then we saw the oncologist who also was wishy-washy but consulted with the surgeon and together they solidified their recommendation for the laparoscopic biopsy. They felt it would give them the best possibility of obtaining an adequate tissue sample and they didn’t want to assume that all the tumors were the same. Since there are two large tumors and several smaller ones, they wanted to at least surgically biopsy the two larger masses and maybe even some of the smaller ones. We were concerned about Kaia’s recovery and possible impact on her kidney function. I also felt that it was excessive to biopsy so much and didn’t agree that we couldn’t assume they were all the same. We were pretty overwhelmed with everything that day, though.

They also drew Kaia’s blood and wanted to get a urine sample. So they placed a couple pieces of gauze in her diaper and we had to walk around and wait for her to urinate so they could get a sample. It was afternoon by that point and we waited until 1:45pm. Kaia hadn’t urinated by that point, I was completely sick of the hospital, and I really wanted to get her home for her nap so that she would take a decent nap and I’d get a little break. I asked if we could just put the wet gauze in a Ziploc and Paul would bring it in the next day. They really didn’t want to let us leave but finally relented and gave me the syringes and a vial to extract the urine from the gauze. Of course Kaia fell asleep on the way home but got a decent nap anyway.

Also, while waiting for the phlebotomist to draw her blood they had sent us to the general waiting area but then came back to get us and asked us to wait in their waiting area. We were a little confused but did so. After they had shut the door, they explained that the other kids in the general waiting area were being tested for a virus. They didn’t say what it was but I was even more paranoid about how in the world we were supposed to keep Kaia healthy in these germ-laden environments. We wash and we wash her and our hands. We use hand sanitizer at every turn.

That night the questions about why they couldn’t do the less invasive needle biopsy kept percolating in my brain. The next morning I called Kaia’s pediatrician and he agreed that it was a rational plan to biopsy by needle and that they should be able to do that. In fact, he felt like considering everything, it was the best thing for Kaia. What if these turned out to be benign? To put her through that invasive of a procedure to find that out when we could’ve done it an easier, less invasive way? Meanwhile, the surgeon’s office was calling us, pushing us to schedule the laparoscopic biopsy. I told them we still had additional questions and I called the oncologist to speak with her about it again. The whole day I was off and on the phone with them about it. She finally called late in the day to say that everyone there – the surgeon, herself, the pediatric and interventional radiologists, felt that a laparoscopic biopsy was the best course and beyond that, the interventional radiologist refused to do a needle biopsy. He felt that in order to obtain adequate tissue he would need to stick her multiple times and she’d be at increased risk for bleeding. Again they pushed us to schedule the surgical biopsy. I was beyond feeling pressured and fed up at that point. I couldn’t help feeling like these people just saw my daughter as a great health insurance package and wanted to do as many things to her as possible to make the most money possible. Encouraged by Kaia’s pediatrician earlier that day, I told them we’d be pursuing a 2nd opinion.

So Kaia’s pediatrician directed us to a surgeon at the other children’s hospital in town. No magical patient relations there either. I couldn’t make the appointment, I was very condescendingly told. The referring doc had to do it. I called the pediatrician’s office (again), who called the surgeon’s office to make the appointment and we were scheduled to see the surgeon the following Tuesday, a week away. Since this was such an urgent matter for the docs at the other hospital, I called (now that Kaia had an appointment made by the pediatrician’s office, they would actually talk to me) and begged for an earlier appointment. I called at least 4 more times. Finally they called me back Wednesday at 1:30pm and said that the original surgeon couldn’t see her but another one was available and how soon could we be there? Kaia needed to be changed and nursed (and would probably fall asleep for her nap as was usual). I still needed to get presentable to leave the house, and Paul still had to pick up the CD of the scans from the other hospital and meet us at the new one. Talk about rushed. We got there at 3pm.

This doc seemed very optimistic that not only could they do the needle biopsy, he agreed that in light of everything, it was the best course for Kaia. Wow – a surgeon that actually wouldn’t do surgery because it was the best thing for the patient not to do it? Astounding. Fortified with hope, we left him so that he could consult with that hospital’s oncologist and to do some more research before coming to a final recommendation for us. This doc also seemed more up to date on the current research/protocols for treatment, or maybe he just actually considered other options and did a better job communicating these to us.

The next day he called and said that they were pretty confident that this was Wilms Tumours. They did indeed recommend a needle biopsy as opposed to laparoscopic biopsy, and in direct contrast with the other hospital, they were not only confident that they could get adequate tissue for a diagnosis, but that they would only have to biopsy one tumor. Due to the tumor location, they were also confident that they could so by insertion through Kaia’s back, thereby avoiding the peritoneal cavity. Biopsying through the peritoneal cavity would change the staging if it indeed is cancer and would mean not only chemotherapy but also radiation. They had a slot the next day on Friday and we took it. This was all happening so fast but I was so glad that I stuck to my guns and had pursued a 2nd opinion. I was still nervous about the general anesthesia but we knew that we wanted to find out what the masses were.

We received the preop registration call from the hospital. We got at least 3 different preop instructions regarding npo/clear fluid timeline restrictions. The biopsy was scheduled for 11am. The first instruction was that I could breastfeed Kaia until 8am. The 2nd was until 5am. The last was nothing by mouth after midnight. The first 2 instructions were from dr’s. The last was from the assistant that did scheduling. She said that babies under 12 months could have breastmilk up to 6 hours before but since Kaia was 22 months she couldn’t have anything after midnight. She kept asking how old Kaia was and repeating that it was breastmilk. I’m sort of starting to feel the toddler breastfeeding discrimination here.

Wouldn’t you know it – Kaia hasn’t had a cold for months now and came down with one Thursday night. I think Paul thought I was making it up because I was so afraid of the general anesthesia, but sure enough when she got up on Friday morning she was sneezing and had a runny nose. Not too surprising after where we had spent the whole week – in hospitals and doctors’ offices. I called the hospital and they told us to bring her in since she didn’t have a fever and that the anesthesiologist would examine her to determine if it was safe to proceed with anesthesia.

The anesthesiologist felt that it was safe to proceed. It was a quick procedure. The radiologist was a little flippant and couldn’t even remember Kaia’s name when he called to tell us he was done and that she was going to recovery. He said they’d be calling us to “let us know when you can go see (long silence) um…your kid.” It would be nice if the doc’s could remember her name but we both agreed we really didn’t care as long as he did a good job in the OR. He said the pathologist’s preliminary report was that it was Wilms Tumour.

By now we knew this is the most common form of renal cancer in children under age 6. It is highly treatable but the standard treatment is removal of the affected kidney followed by chemo. Normally that’s how they do the biopsy too. Since most kids have 2 kidneys, they remove the whole thing, biopsy it, and if it is cancer, there’s no chance of tumor spillage like there is with a needle or laparoscopic biopsy. Since Kaia only has the one functional kidney, that wasn’t an option.

They kept Kaia for 4 hours from the time she woke up for observation since she had a bad experience after the cleft surgery. The good thing was I was able to nurse her immediately when she woke up in the recovery room. They are such Nazis about starting on clear liquids but we had a great nurse in the recovery room who said go ahead to nurse and I was so glad once again that I am still nursing her. She was so comforted by it and nursed off and on the whole time. She was very alert for a while and then fell asleep nursing for a very nice nap.

She was asleep in my arms and my back started to hurt from sitting in that position. It felt sort of like we were on a plane, with her as a lap child, and I was stuck because she had nursed to sleep and if I moved I would wake her. I also started to feel as if the little curtained-off private room area we were in was a prison of sorts. We couldn’t leave. I just wanted to go home. I wanted her IV out, those hospital pj’s off her, and the ambient noise of the hospital to stop. I just hate hospitals. It’s as if time stands still there. It goes in some deep black hole and you can never get it back. It’s like time limbo.

But I took the opportunity to read and actually finally finished El alquimista, the book for my Spanish class that ended on Tuesday. A new session restarts this Tuesday and it’s through a local organization so I don’t receive a grade or anything like that, but it was still bothering me that I hadn’t even found time to finish the book. I get frustrated that I can’t devote the time I’d like to outside of class to studying, reading, and writing.

The one very noticeable difference about the new hospital was how they were obviously more used to caring for kids with special needs. I must have heard the words “g-tube” more times on Friday than I have in my whole life. No one assumed that Kaia could do things that are developmentally appropriate for her age. In fact, they assumed the opposite. We had to ask the nurse who was weighing her if it was okay for Kaia to stand on the scale instead of sitting. And no one assumed that she could walk. I wouldn’t say they were surprised that she could, they just didn’t expect it. That aspect of things was so different. It was refreshing.

And Kaia, well, she actually did better after the anesthesia for the biopsy than she did after the sedation for the CT scan. The anesthesiologist said the agents he used were faster acting. She was totally alert and playing like normal Friday evening. I had such a feeling of relief leaving the hospital and being home with her and Paul that evening. The joy of just being home and having her happy was almost more than I could imagine.

Back to the biopsy itself. I feel so vindicated in our decision to have the needle biopsy rather than the laparoscopic procedure. I hope that if it is cancer, this procedure doesn’t put her at increased risk for metastasis, but the only other options were to treat it like cancer without biopsying it at all, not do anything and just watch it, or proceed with the laparocopic biopsy which would’ve advanced the staging further.

The pathologist will complete the final report by Tuesday. I truly hope they do a thorough job with the tissue that they do have and perform all the tests and stainings in order to rule out anything else. I hope their suspicion that this is Wilms doesn’t hamper a thorough examination of the tissue.

If the final report agrees with the preliminary report, we plan to meet with an oncologist from the new hospital next week and go from there. If it all sounds like a lot, it is. It is overwhelming, yet we are dealing.

I just was not ready for this. Sometimes it seems like nothing is easy with Kaia. Even her drinks are difficult. They are a mixture of whole milk yogurt for thickness, carnation instant breakfast, and either breastmilk, whole milk, or half and half if we’re feeling like she really needs the calories. There’s the fact that she’s not chewing yet. Feeding is a struggle – it’s getting better in some ways but still a struggle. There’s the ever-present fear in the back of my mind that if she doesn’t gain weight the doctors are lurking around the corner watching and waiting to put a feeding tube in her. There’s the constant awareness and reminders required to keep her from w-sitting all the time. There’s the fact that she is still unsteady enough on her feet that she can’t wear shorts or dresses without leggings or her knees will be a bloody pulp from falling.

But we knew all those things were possibilities. Even more than possibilities, they were likely. But cancer??? That’s something I wasn’t expecting.

Not to mention I’ve got my own issues with cancer and traditional treatment. I watched my grandmother, my mom’s twin sister, and my mom, all go the route of traditional western cancer treatment and die a slow death. I have and am watching my sister bravely undergo surgery, chemo and radiation. All the while the cancer progresses. I don’t know if I can put my daughter through that. Part of me believes it might be better to just vibrantly embrace and enjoy the life you have and die when the time is up. But if this is something truly treatable, I can’t deny my daughter that treatment. I think we are just both scared that because she only has the one kidney, we’ll put her through all this: another surgery to place a central line, chemo, possibly radiation, and more sedations for scans. Then the docs may tell us that either the chemo isn’t working and they need to do something stronger, or they may want to surgically remove the tumors. I’m scared to death that if they try to that, they will damage her one good kidney irreparably and she’ll be left without a kidney and need dialysis. And all the prior surgeries and chemo, all that pain, will have been for naught. But all we can do is deal with the info we have at the moment and try to make the wisest choice in consideration of everything.

I know it sounds like we have been consumed by doctors, hospitals, and been bogged down by thoughts of what the future might hold. In a lot of ways that is true.

But, in the midst of all this, there have been moments of great joy over the past couple weeks. There was Kaia starting to sign “My turn” – a huge accomplishment for her, her squeal of surprised delight at the first sight of her new tricycle, and her already almost getting that she needs to pedal the wheels to make it go. There was watching her start to interact and initiate contact with the other kids at horse therapy while the therapists write their notes, and seeing her intense curiosity and slow warming to dogs that the neighbors walk down the block. There is her huge smile when she sneezes and she looks to you to say “Bless you”. There is her progress walking quite skillfully now on uneven terrain like the grass instead of just the sidewalk/driveway. None of these doctors or diagnoses can take those joys away.

And, like Paul said, what he took away from the biopsy on Friday was how well Kaia did. How well she bounced back. How it was harder on him that it seemed to be on her. She really is such a strong girl.

I know that if you are still reading this I can count on you for this request: Pray, if that is what you do, for her. Pray for us. Send us positive energy and warm thoughts like rays of sunshine to warm our souls. Because if this is what they think it is, we are going to need it.

Ride on, my girl

Last week Kaia’s PT suggested we look into getting Kaia a ride on toy. Kaia had one that her grandparents had purchased brand new for her last year that converted from a sit down ride on car to a push toy. She loved the push toy aspect of it but she’s so tall that it was just too low for her to use as a ride on toy.

It’s still too early for garage sales so I checked out craigslist. It’s a little pricier than garage sales in general but sometimes you can find exactly what you’re looking for without driving to a bunch of sales.

I picked up this toy on Sunday afternoon. It was in great shape, had never been used outside, and cost only 10 bucks. We put batteries in it and Kaia loved pushing all the keys and buttons. She’s really isolating her pointer finger to push now. I tried to show her how to use her legs to push but she just didn’t quite get it.



On Wednesday her PT made her weekly visit and worked with Kaia for about a half hour on the ride on toy. She helped Kaia put her legs back up on her toes and assisted her to push the toy backwards with her feet. By the end, Kaia was then pushing the toy forward if you prompted her with the backward assist. She still wouldn’t keep going though. I continued to work with her after the PT left until her nap. Right after lunch she pointed and vocalized to her toy so I assisted her on to it by helping her shift her weight to one leg and again prompted her by giving her the backwards assist. Kaia pushed forward and then kept going! It’s so cool to see her getting it, to see that connection form in her brain, to see her learn and progress. She loves this toy, and hubby had to admit it was a good buy!

Weekly roundup

Kaia’s Aunty Karen recently bought Kaia this book. Kaia, in the last couple weeks, started pushing the buttons which motivated me to start looking into augmentative communication. We know that kids with her syndrome, in spite of having a limited vocal vocabulary, are often very successful at using complex augmentative communication systems. So, I spent the lion’s share of last Sunday and Monday trying to figure out if our early intervention program would cover augmentative communication devices. I finally discovered after much pestering of Kaia’s service coordinator that we could get her an augmentative communication evaluation. I’ve heard that if she does well and they think she may have the ability to be successful with a device, we may be able to borrow or rent different ones. Getting this evaluation, along with several experiences with our early intervention program over the past few months, cemented what I’ve been learning, which is this: no one will necessarily look out for your child or offer what may be incredibly helpful services for your child. You have to do your own research and advocate for what is best for your child.

Vital Stats – On Thursday, Kaia’s nutritionist/dietician made a visit and weighed and measured her. Kaia weighed in at 24 lbs 13 oz bare naked, and is 34 and ¾ inches tall. That’s an increase of 1 lb and 11 oz and 1 full inch since the dietician’s last visit Jan 16th! Kaia really is a tall, thin drink of water. But something is working! She’s gaining weight and height. We’ve recently discovered that Kaia loves Haagen Daaz ice cream (260 calories in one little serving container. She never eats the whole serving in one shot; it usually lasts a couple days).

We absolutely love Kaia’s speech therapist. In addition to all the speech and language play she does with Kaia. she also started a feeding therapy with her that is deceptively simple. She takes the pressure completely off of eating and does it outside of the highchair, using foods that I want Kaia to eat: crunchy/chewy snack stuff that she has to chew. It is a very positive experience for Kaia; any attempt made by her to mouth, lick and/or bite down merits lots of praise and clapping. We all participate and at the first sign of distress Kaia can put the offending food in an all-done container. It wastes a lot of food but it definitely is worth it. Kaia frequently prefers to try to feed us, but she will and loves to have me “kiss” her with the cracker/whatever in my mouth. This is actually how she initially started allowing these foods to come close to her mouth. She is now at a point where she even retracts her tongue and attempts to bite down on the food when I “kiss” her with it. It’s all very fun, there’s lot of smiling, giggling and chortling going on. Kaia was starting to chew this weekend while eating and I know that it is because of this type of activity.

On the respite front, we finally! selected a provider. We learned that the annual budget operates on a fiscal calendar from July 1st to Jun 30th which means that we have just over 3 months to use up our annual allotment of respite hours or lose them. I found a trusted old coworker who is willing to do all of the hours we have available. So, if we want, we can have two 4-hour evenings of respite each week until Jun 30th. While this is tremendously exciting, I’m a little nervous to be away from Kaia so much. However, I completely trust this person and that brings such peace of mind.

Speaking of respite, this past weekend we took Kaia to two Parent’s Nights Out programs in a row. The PNO we’ve been using through Easter Seals Crossroads expanded their program and parents can now bring their child two times a month. We also found a church that offers a quarterly PNO so we had Kaia attend that for the first time on Saturday. Both programs were great and seemed extremely well organized. I can not even say how great it was to be able to go out to eat and just talk. We rarely have time to do that – to just focus on each other. We really tried to follow some wonderful relationship advice and not discuss the child(ren), jobs, or money. Instead, we just focused on each other. It was so refreshing.

In other Kaia news: Kaia loves, loves, loves clapping and will now bring both pointer fingers to her face dimples area to initiate or imitate “when you’re happy and you know it” song. If we don’t clap for her when she is expecting it she will take both of our hands and bring them together to have us clap for her. I think this is also a revival of the game “close together, far apart” that we’d play with her while she was practicing balancing standing to get her to be able to move her arms to different positions and still keep her balance. She’s also kissing like crazy but does these open-mouth, drooling French kisses that we absolutely adore.

And, finally, probably the best part of the weekend for me: We Went Running! In my former life before Kaia, I ran. Hubby and I ran in half marathons and enjoyed the bonding and health benefits. After Kaia, I was determined to get back into running, and I fought valiantly for several months. I registered for the mini marathon in Indianapolis and tried and tried to train. At best, it was incredibly difficult to even complete a training run on the treadmill while Kaia was napping. One day it took 3 of her naps for me to complete my run. As Kaia got older, I didn’t want to strap her into a stroller, immobile, during the precious little time that she could be learning by moving her own body. I was expecting way too much from myself and it was stressing me out no end. Most days I was lucky to get a shower. I finally decided to accept that for the time being, running just wasn’t going to be a part of my life.

And now, a new chapter is beginning. For the past few weeks with the spurts of warmer weather, Paul and I have been saying that we should attempt a run and see how Kaia handled it. We went tonight and Kaia loved it! She pointed out and squealed at the deer in the park, laughed when I ran past the stroller, and enjoyed the music we listened to from the speaker on my cell phone. It was so great! My knees are a little stiff but I am finally starting to reconcile her need for movement with my own. I think a couple necessary things are happening: she’s started walking and I’m seeing the amazing progress she’s making with her gross motor skills. I know that having her in the stroller a few times a week while we run isn’t going to be the end of her progress. We still are very conscious of her need to move and made sure that when we finished our run, while we were stretching, she got out of the stroller and had the opportunity to walk around on the grass. She enjoyed all the antics of our stretching positions. Then, when we got home, we gave her more opportunities to push her toys and walk outside again. The other necessary thing, aided by the positive experience of our parent’s night out, is that I’m realizing we really do need to do things for us - that not everything can be about and be defined by what is best for Kaia. We are a family and our needs matter too. Part of me can’t even believe I’m saying that but I know that I need to take care of me too. My whole world is taking care of Kaia. Next comes my husband and his wants and needs, and last is me. It’s been too long. So, while I’m not signing up for the next half marathon yet, I am going to try to run a few times a week. Just for me.

On the go, go, go

This past weekend was go, go, go. Saturday was a balmy 70 degree day here in Indy. We decided to head to the zoo. We purchased an annual zoo membership in December after being entranced by the Christmas light displays and zoo hours open until 8pm. Then January and February set in. Frigid, raw cold. No zoo for us.

I think every family with small children all had the same idea Saturday. It was stroller central. It’s funny. I’ve noticed our stroller usage is different than how other parents utilize a stroller. While other parents will use the stroller as transportation for the child, we use it to haul our huge diaper bag, my purse, etc, and have Kaia push the stroller. Unless, like on Saturday, we have Kaia nap in it – which normally I never, ever do because I am a total nap slave. She needs to sleep in her crib. I revise that – I need her to sleep in her crib. I need that break each day. It’s just funny to see all these other kiddos hanging out, chillin’ in their ride, while Kaia, with proud intent, determinedly pushes her stroller along. I want her to have every opportunity to move her body, to know how to use her body for her own transportation.

I had to nurse Kaia a couple times at the zoo and it was pretty inconvenient. There’s no real great place at the zoo to nurse a toddler. We found an empty amphitheatre but later another Spanish-speaking family and children were hanging there too. There was no other place to go so I nursed her there while all the kids played around us. I wondered for the first time if other people think Kaia might be getting a little old to be breastfeeding. I sat her up to pat her back and burp her and stood her up and realized how big she was getting. It was in stark contrast to a woman I had just witnessed in the women’s restroom nursing (or attempting to) an 11 day old baby. The baby looked like a little bird to me. She had to literally show the baby the nipple and after several attempts finally got the baby to latch on. Kaia was like that before too but now is like a little barracuda. She now lifts up my shirt if I make the milk sign to her. There was no way I could’ve nursed Kaia in that restroom. Every flush of the toilets and rocket launch noise of the hand dryers running intermittently would’ve prevented her from nursing.

Instead, I peacefully nursed Kaia in the amphitheatre, while I watched the large-by-North-American-standards Hispanic family kids play contentedly around us. My husband snoozed on a bench nearby. I felt the wind blowing gently through my hair and the sun shining on my face. My little girl suckled at my breast, and I sensed how truly good life was in that moment.

Kaia also continued hippotherapy last week. She was standing! while riding on the horse this week. She’s been riding a different horse than Molly (the white show pony on the first day). Her newest steed is a brown horse with white markings on the face. He has a thinner back. And, get this, his name is Fairy Tale. Can you believe that? Fairy Tale. How cute is that? After hipportherapy we went up to a friend’s house for a playdate. Kaia will be starting a new OT at the end of April and the only time she has to fit Kaia in is immediately following hippotherapy so we'll have to race back home to see her. Until then we're going to enjoy being out and about early in the day on those days. But the good thing is then we'll have Fridays completely therapy-free. I'm looking into another storytime we could go to on those open days or maybe we'll just do other fun stuff. It's so hard to get out with all her therapies. I'm also looking into starting her in a kindermusik class. The girl isn’t a bit overscheduled, is she?

Sunday we went to the circus in the late morning. I was so excited to go to the circus. We were all a bit disappointed, though. I remembered the childhood magic of the circus, but the reality of the thinly veiled animal mistreatment, borderline talent, annoyingly overamplified sounds, and the mixture of the smell of cotton candy and animal dung just wasn’t as magical as I’d remembered. $18 a seat wasn’t too magical either. We managed to stay for almost the entire show then Kaia had had it and got pretty cranky.

We also spent some quality time out in our front yard/driveway this weekend so that Kaia could practice walking/pushing her various toys. Our whole neighborhood comes alive in the spring. We don’t have a playground in our neighborhood so the kids really just play in the street. It sounds like the projects. It isn’t, but I do think these kids could use a decent place to play. All the kids come running when Paul is out with Kaia. He’s like the pied piper. He’s always been like that, even before we had Kaia. Back then it was all the neighborhood preteen boys (who are now, I can’t believe it, in college). Paul is the cool old guy. The guy that knows how to do all the skateboard tricks that their Dads can’t do. Paul had a half-pipe in his backyard growing up so he is more than a decent skateboarder. But all the kids are in awe of someone who is their Dad’s age throwing those kids of tricks, and ask “Are you sponsored?” I know he loves it.

One very cute little neighbor girl always come to see Kaia when we are out. She is such a sweet girl. She is 5 and will be starting kindergarten next fall. She just loves to come see Kaia. On Saturday we had Kaia’s wagon out, her fancy radio flyer wagon. She alternately likes to push and ride in it. The neighbor girl joyously insisted on pulling Kaia around in the wagon.

I had this image watching them as she pulled Kaia in the wagon down the sidewalk. I imagined them older, in high school. The girl is just over 3 years older than Kaia. I thought - maybe when they are older, in school - she will look out for Kaia. Maybe if she sees her in the hall or at lunch she will say hi to Kaia. Maybe she will set an example for how the other kids should treat people that are different. Maybe she will be a guardian angel of sorts for Kaia. I know that’s a lot to put on a 5 year old girl. But I’ve got my dreams.

What I love about this girl is that she never once has asked what happened to Kaia’s lip/nose. She has a bit of a speech issue – she stutters – so maybe she understands what it’s like to be different and sees past that. Or maybe her parents already have had the talk with her and explained things and told her not to ask. I don’t care. I just love it that she loves my girl.

It was so cute how she would copy how I interacted with Kaia. We’ve been teaching Kaia how to climb into her wagon herself (it’s pretty difficult b/c it has the high wooden sides attached to the metal wagon base) and the other girl took it upon herself to teach Kaia as well. She would repeat almost verbatim the things I and Paul said to Kaia. What power we adults have, for better or worse, on children. I forget that sometimes. It surprised me to see that we have that over other children, not just our own.

All in all, it was a pretty good weekend.

Alternative therapy

Last Friday I took Kaia to an alternative type of therapy. Another mom I know that has a kid with cerebral palsy was frustrated with the progress her son was making in traditional therapy and with the lack of creativity of the therapists. She researched other types of therapies and found one called the Anat Baniel Method, based on the work of Feldenkrais. More info at: http://www.anatbanielmethod.com/help-children-overview.htm There were no practitioners of this particular type of therapy in our city. The closest was in Chicago, a three hour drive away. So, desperate to try anything that might help her son, she drove him up to Chicago to do this alternative therapy. Thankfully her insurance is covering the cost (or at least part of it) of the therapy.

Being part of a group of moms with kids with movement issues, she and the practitioner decided to gauge interest by having the practitioner come to Indianapolis for a weekend and offer a free trial session to kids here. I jumped at the chance to give Kaia the opportunity to experience this alternative therapy free here in town.

I have to admit I was skeptical. Some of the tenets of the therapy I agree with partly, in principle. For instance, they advise no orthotics. We actually waited quite a while before finally getting orthotics for Kaia. My concern was that she would never strengthen her ankles, which pronate, if they were fixed in orthotics. I finally relented to the idea that if we give her that support, she would have an opportunity to strengthen the other muscles needed for walking by being able to have the stability to try it. The Anat Baniel practitioner (she’s not a licensed OT or PT) also advised us not to assist Kaia walking by holding one of her hands. The idea as I understand it (which may be completely wrong) is not to force a child to be more upright than they are ready to be. The woman, after having me remove Kaia’s shoes and orthotics, spent most of the time touching/stimulating Kaia’s feet in a sitting position. She also touched her back. She didn’t mind Kaia being in, and didn’t force her out of, a w-sit position.

I still don’t really completely understand the theory behind it. Perhaps she didn’t do a very good job explaining it or maybe I just didn’t listen well. The other mom’s kid and Kaia have the same physical therapist. This PT was there observing for the session (The other mom had scheduled the PT to be there to watch her son’s session and the PT stayed for Kaia’s upon my request). I could tell she was trying very hard to be respectful by asking questions regarding the how/why of what the woman was doing. I didn’t think the practitioner provided an adequate explanation to her either. There definitely was some tension in the air. It pretty much is the complete opposite of everything that we’ve been told by traditional therapy to do with Kaia.

Kaia is tactilely defensive and did an admirable job putting up with all the touching. But fairly quickly she started to push the woman away and started signing “all done” and “bye bye” to her. I felt a little guilty forcing Kaia to submit to this therapy and yet I force her to do things that she doesn’t necessarily want to do all the time because it’s good for her – changing her diaper, brushing her teeth, etc. Inwardly, I was elated to see Kaia communicating her desires, even if I couldn’t fulfill her request. Thankfully the woman discovered some quirky things Kaia likes. Kaia warmed up to her so much that by the end she was trying to kiss the practitioner.

Anyway, the upshot is that if the practitioner generates enough interest, we could bring Kaia for sessions with her when she comes to town for a cost of $95 per hour. It’s actually unusual for insurance to cover it. I told her I’d check with our insurance to see if they would cover it because otherwise we really couldn’t afford it.

That same evening we brought Kaia to the monthly parents night out program. When we picked her up, Paul took her by the hand to assist her to walk down the hall. Wouldn’t you know it, she pulled her hand away and walked - on her own - the entire length of the hallway. It was at least 25 feet. The only reason she stopped was because the hall ended. We’ve had these breakthroughs before but she will usually revert to crawling almost immediately. So I didn’t hold my breath that it would remain consistent. She definitely has been on the cusp of walking for a couple months now, though.

Saturday we took her swimming in the morning and shopping in the evening. She was off and on with the walking. On Sunday, we put her therapy shorts on her. They’re called hip helpers, are bright red spandex, and she looks like a little super hero wearing them. She took off on Sunday! She walked at least 50 feet continuously and even made a 45 degree turn on her own in the middle of that stretch. She’s kept at it; alternating between doing really well or not being as motivated when she’s tired and/or hungry.

But she really can and is walking! She still falls a lot and walks with a wide base of support (the shorts do help with that), but she can do it! She can also climb up on to the couch by herself now! (That started late last week). Even after coming down with a cold Monday morning, which has thrown her balance off in the past (one of her therapists attributed that to increased fluid in the ear, which is the center of balance), she has continued to persevere in attempting to walk this week.

She also made the “help” sign to me, independently, without any prompting, today. Holy cow, was I surprised. Then she did it again a few more times. She also has said “bubbles” and “more” a couple times this week. She just loves those bubbles.

So what do you all think? Do you think she was just ready, no matter what? Do you think it was the one alternative therapy session? Do you think it was the hippotherapy (she’s gone 3 times now)? Maybe it’s the confluence of it all.

I wish I knew, but in the end I guess it doesn’t really matter. I accepted long ago that all we can do is maximize Kaia’s environment and provide opportunities for her to progress. She’s going to do it in her own time. I’m constantly amazed by her perseverance and her abilities in spite of the incredible challenges that she faces.

She's on fire

Kaia was on fire walking today. It's like she is turning a corner or a switch is happening in her brain that maybe walking can be as or more efficient that crawling. Several times today she would go from a supported standing position to another supported standing position via a few independent steps. I think she walked 5 feet in the living room that way. It was so cute, she did so with these short, staccato steps; almost a run. She has done this before but the quality of her movement and steps is getting so much better. I probably sound like a therapist when I say that but it's true. Lately I've been surprised by just how much she is choosing to stand without support as well, even when not enticed by a favorite toy. And over the weekend she was walking most excellently with one hand held. Most of the time she would hold on to just one of my fingers, as if she just needed the security that she was indeed being supported.

Then, tonight. It was a gorgeous day here. All of our recent snowfall has melted and it was almost 60 degrees today. So after dinner Paul took her outside to push her wagon. Even with all the above progress I still could not believe it when he said that she walked 27 consecutive steps! chasing the wagon just slightly out of reach ahead of her. That's a record. I wish he could've gotten video of it. I am feeling more and more optimistic that she is getting closer and closer to walking independently. She is such an amazing little girl.

Signs of the time

Kaia has officially added another sign to her repertoire. She really is making steady progress with communication. For the past week she’s been doing the “all done” sign, in addition to “more” and waving “bye bye”. The "all done" sign looks kind of like if you were brushing crumbs off your chest. The way Kaia does “all done” is kind of a both hands wave. She gets very excited when she sees us excited about her doing the sign. We start signing it back to her and her sign becomes even more animated.

Her receptive language ability is also growing more evident. Lately when we tell Kaia "it’s time to eat" and make the eat sign to her, or ask her “where do we eat?”, she vocalizes and points with an isolated pointer finger to her highchair. Then she crawls very excitedly to the highchair, pulls up to it, and looks at us like, OK, you said it’s time to eat, let’s eat.

She also loves her pecs schedule. Pecs is a picture exchange communication system. We started doing very primitive versions of pecs last summer with Kaia. Initially we offered choices with the pictures, and reinforced whichever picture she chose with that toy or activity. Then Kaia’s speech therapist taught us how to use a picture to teach her the concept of exchanging the picture for a desired outcome. For example, we used a picture of a green circle during a turn taking activity and Kaia would have to give us the green circle to have a turn with the toy. At first, when Kaia wasn’t yet releasing objects, we had to have two adults doing this activity with her. One adult would physically assist Kaia hand the picture to the other adult to get her turn. It’s much easier now that she is releasing objects because she is also giving us things.

Our newest foray with pecs is an activity schedule. I read about this at: http://www.brighthub.com/education/special/articles/2723.aspx. Although it really is intended to help kids with autism function more independently, I figured it would be an easier way for us to incorporate pecs into Kaia’s daily life now by giving her more opportunities to have exposure to the pictures and the concept that the pictures mean something. The other methods above I found I had to make a conscious effort to do once each day. It was another thing on the to do list each day and Kaia only had that one opportunity each day to learn that these pictures are useful for something. Kaia also thrives on routine so setting up a visual schedule seemed to make sense with her affinity for routine. It still is difficult to remember to return to the schedule so that she can remove the latest completed activity and put it in the all done envelope. Sometimes we get a few pictures behind but we just talk about them when we do catch up and she loves the chance to put more than one in the packet. It’s great because we make her stand to remove the picture, then squat to put it in the packet.

Last, but certainly not least, Kaia was also saying mama like crazy on Saturday. Music to my ears!

And the milk goes on...

WARNING: What follows is, as my husband describes, a “graphic” description of Kaia’s and my breastfeeding journey. I did not shirk from including details that some may find very comprehensive and personal. I want other moms who are expecting special needs children to find an honest account of the challenges and joys of breastfeeding of a child with special needs. I searched for stories like this before Kaia was born and found few.

So, without further ado, our breastfeeding story:

I was never the girl who knew she wanted to have kids. I was never the woman who knew she wanted to be a stay at home mom. I actually, shamefully now, kind of looked down on women who did. But, there was one thing I always did know. I knew that if I ever did have kids that I would breastfeed. I had this image in my head of me nursing a baby in a rocking chair.

So, when we were told by the doctor that the ultrasound tech had detected that our unborn child had a cleft lip and palate, one of my first questions was, “will she be able to breastfeed?” The doctor said probably not. Then when we got the amniocentesis results back and found out that she had a rare chromosomal syndrome with a primary feature of low muscle tone, it seemed that there was no longer any question of her ability to breastfeed. For the doctors, anyway. Many of the kids with her syndrome needed feeding tubes, they told us. Kids that didn’t even have the complicating factor of a cleft lip and palate. They tried to see with ultrasound how far the cleft extended into her palate. We were told to expect a full cleft including the soft palate. One of the doctors had a child with a cleft and she took a special interest in our situation. She said our baby wouldn’t be able to breastfeed. So did the plastic surgeon. So did the geneticist and developmental pediatrician. I could pump breastmilk, they told me. But she won’t be able to breastfeed.

We made a decision to deliver at a facility that had a level 1 neonatal intensive care unit instead of the suburban hospital where our regular ob/gyn delivered babies, in case there were additional health problems we couldn’t foresee with ultrasound. The doctors at the high risk practice would continue our prenatal care and deliver our baby at the other facility.

Kaia was born via c-section one early Friday morning. The doctors, in the first of many predictions, had been wrong about how far her cleft extended. It barely extended into the hard palate, just affecting the alveolar ridge. Later that day Paul rolled me down the hall to the nicu for our first attempt at breastfeeding. Thankfully this facility with a level one nicu had lactation consultants on duty 7 days a week. Kristin was the first lactation consultant. She showed us how to tickle Kaia’s lips with the nipple to get her to open; how I could sit and hold her in a football hold – the most comfortable position after having a c-section. Because of Kaia’s cleft, she showed us how to use a nipple shield, which allowed Kaia to have the nipple extended further into her mouth. Kaia, the little trooper, latched on right away. She proved them all wrong. Those consultants were there with us for every feeding for several days. We had to prove to the doctors that she could get enough milk so before and after every feeding we weighed Kaia to see how much milk she drank. She had jaundice which made her very sleepy so we had to work very hard to keep her awake during feedings. We tickled her feet, combed her hair, anything to keep her awake. Because she was in the nicu, we used curtain screens around her little bassinet area in the nicu for privacy during feedings. There I was in a wheelchair, completely ensconced by supportive pillows, surrounded by Paul, the lactation consultant, and one or more RN’s. Often the doctors would peek his head over the screens to talk with us or the nurses. I didn’t care. My little girl was breastfeeding.

After a few days we introduced a haberman feeder; a special bottle designed for babies with clefts. Paul could feed her and the nurses could do night feedings in the nicu with it. Upon advice from the lactation consultants, I continued to pump following every feeding and every 2-3 hours when I was away from her. That advice was crucial to me developing an abundant milk supply. Kaia came home after a week in the nicu and I continued to pump after every feeding. Until she had the cleft lip surgery at 4 months of age, I continued to pump. After almost every feeding I would offer her the haberman bottle with expressed breastmilk to make sure she was getting enough milk. We could squeeze it to get her drinking again when she tired.

I liked the haberman at first. I wasn’t an experienced breastfeeder. That, combined with the use of the nipple shield and my abundant milk supply pretty much guaranteed that breastfeeding was a messy spectator sport. It just wasn’t something I was comfortable doing in public. So we used the haberman in public and Paul could help with feedings at night on the weekend and in the evenings.

I became an experienced pumper. That hospital pump was my constant companion. I pumped on airplanes, in airport gate areas, in bathrooms. But most of all, I just pumped. Often. I found a great product called a nursing cape. It was great for nursing and also for pumping. With it, I could pump in all the settings I mentioned and still retain my modesty.

I heard so many new moms complain about a low milk supply problem. I had the opposite situation: an overabundant milk supply. Now, if you have to have a milk supply problem, I was glad that mine was an overabundance. However, it was still complicating. I leaked. I leaked through countless nursing pads. I should’ve bought stock in a company that makes nursing pads, I went through so many of them. Even when Kaia would start sleeping longer at night, my breasts would wake me up at night, heavy, leaking and demanding a release. I also had to pump “off the top”, or pump off the foremilk, before breastfeeding Kaia. I had so much milk that the initial letdown was so powerful and there was so much of it that it would overwhelm Kaia. I would usually pump 2 oz off each side before feeding her. Since I routinely pumped 6-8 oz off each side she still had plenty of milk and she would receive more of the higher fat hindmilk.

There was one advantage to an abundant milk supply. The weight that I had gained while pregnant - the recommended 30 pounds - literally melted off during the first months after Kaia was born. I didn’t do a special diet or exercise program. It just came off. I figured out that I was expending 800 calories or more each day producing breastmilk.

When Kaia was a couple weeks old I went to a La Leche meeting. I thought that I was looking for support and encouragement. Really, I think I just wanted everyone to treat my breastfeeding experience the same. Everyone there focused on how Kaia was different: her cleft. I was already getting used to that and would continue to do so. However, I didn’t feel like it was a great help to go. I also had this underlying feeling of inadequacy as a breastfeeding mom because we were using the nipple shield. That artificial device felt, well, it felt so artificial. So unnatural. I didn’t feel like we were truly breastfeeding. I grew to hate the nipple shield. I had to wash it after each feeding and have it handy for the next feeding. I’d be upstairs ready to nurse Kaia, breast out, and realize the nipple shield was downstairs, freshly washed next to the sink. I lost one and we joked that we’ll find it when she’s 3. She 19 months old now and we still haven’t found it.

I didn’t return to La Leche until Kaia was 7 months old. When I did, I met the most inspiring woman there. Her name was Melissa and she too had a child with special needs. Her daughter had low muscle tone like Kaia, but required a g-tube. Melissa had kept pumping for months to supply her daughter with the best nutrition available – her breastmilk. I was so encouraged to see her there. I thought, if she is comfortable and is able to find encouragement here then so can I.

Eventually, after so many feedings with the haberman, Kaia started to get nipple confused. The week right before her surgery at four months of age she went on a nursing strike and refused to breastfeed. I was so worried that she wouldn’t remember how to breastfeed after the surgery. Of course, I continued to pump to maintain my milk supply and to provide expressed milk for her in the haberman bottle.

The plastic surgeon’s office gave us a syringe/tube contraption to use to feed Kaia after the surgery. We tried it a few times in the weeks before her surgery. It didn’t go so well. Babies have a suck/swallow reflex and there was nothing for her to suck on. We just squirted the milk in her mouth with the syringe tube and she didn’t know what to do with it. I anticipated there would be difficulty after the surgery but the nurse and doctor reassured us, saying we’d be surprised how quickly babies catch on to using it when there is no other food source.

Kaia had her surgery on a Monday morning. It was a very difficult day. She emerged looking swollen and was extremely lethargic. We brought her home the next day even though she hadn’t been drinking with the syringe well. She was so lethargic still. More on this to come in a later post; I want to stay on topic here. By Thursday she still was not drinking from the syringe. I was worried about her hydration and her ability to heal if she wasn’t getting nutrition. Her plastic surgeon finally relented and told me to breastfeed her – but to do so without the nipple shield. She couldn’t have anything that hard near her sutures. A breast by itself is soft enough so that it wouldn’t damage those delicate tissues. I was so nervous. She wouldn’t breastfeed the week before surgery with the nipple shield and had never breastfed without it. Would she recognize that this is where the milk comes from and latch on and drink? Gingerly I held her on our living room couch with Paul sitting across from me. He looked on encouragingly while I held her and showed her the nipple. I slowly and carefully brought her to the breast. Miraculously, she latched on and was so thirsty she didn’t stop nursing for 20 minutes. She came away looking extremely tired and content. When I lifted her she belched loudly. I was crying tears of joy. I was so thankful that I had made the commitment in the months prior to persevere; for all the pumping.

I was still concerned that Kaia wasn’t able to suck efficiently enough to get a sufficient quantity milk so I rented a hospital baby weigh scale, like the kind we had used before and after feedings in the nicu. For a month I weighed her before and after every feeding. There are few resources and research on how much breastmilk babies drink. I found one at: http://books.nap.edu/openbook.php?record_id=1577&page=82 It said babies her age drink 19-30 oz breastmilk per day. Surprisingly, breastfed babies do not increase by much the volume of breastmilk that they drink as they age. Rather, the composition of breastmilk changes as the baby ages. Kaia usually drank between 15-25 oz per day and continued to gain weight consistently on her growth curve. The first month after her surgery, Kaia breastfed exclusively. Breastfed au naturelle, no nipple shield! Hallelujah! The word bottle became a dirty word around our house. I was so thankful that Kaia was breastfeeding I was determined that she would not become nipple confused again. I was completely committed to breastfeeding at every feeding.

Since she was only 5 months old and I really wanted to maintain my milk supply, I continued to pump, usually 3-4 times a day after feedings. I wasn’t sure that Kaia had an effective enough suck to maintain my milk supply. I believed she was able to get the quantity of milk she was getting because I had such an abundant supply and powerful letdown response due to all the pumping. Everyone else told me otherwise. Why are you still pumping? La Leche, lactation consultants, her occupational therapist, even my husband all asked. If she is getting that much milk she should be able to maintain your milk supply. She will take what she needs. I started to doubt my instincts. When she was 7 months old I returned my rented hospital grade pump and pumped sporadically after feedings a couple times a day with a used store-bought pump. My milk supply dramatically decreased. My period resumed. I knew that if I wanted to continue breastfeeding Kaia I needed to keep pumping after feedings to adequately stimulate a good enough milk supply for it to be easy for her to get the milk. So I rented a hospital grade pump again and returned to a prior pumping schedule, 3 or 4 times a day after feedings.

With all that pumping, I accumulated quite a supply of breastmilk. We had actually purchased a deep freeze early on because our freezer just wasn’t big enough to contain all of it. I (half) joked with Paul that all that breastmilk was my life insurance policy. If something had ever happened to me, I knew that Kaia would continue to be able to get the best nutrition for quite some time. Eventually I realized that she would never need all that stored milk. I read about Indiana Mother’s Milk Bank and started the process to become a milk donor. It isn’t the easiest process and there is no benefit such as financial remuneration, but I wanted all that milk to be of use. Milk Banks screen donors, pasteurize donated breastmilk, and give it to NICU’s for preemies and to babies whose health is best served by drinking breastmilk. I think they were genuinely shocked (and very thankful) when I showed up with several large coolers full of breastmilk.

At just over six months, Kaia had started solids as well. I kept getting pressure to increase her solids and have her drink from a sippy or open cup. Until Kaia was 11 months old, we offered breastmilk in an open cup. We noticed her having a wet rattly breathing sound after she drank from an open cup. Upon the suggestion of her Occupational therapist, Kaia had a swallow study done. They couldn’t evaluate breastfeeding in a swallow study, but they found she was aspirating all consistencies; thin liquids, thickened liquids, purees, and solids. Again, more of this subject to come in another post in the interest of staying on topic. The speech therapist that did the study told us she should be admitted right away to insert a g-tube. Kaia’s pediatrician disagreed. Two other doctors that we saw over the next week agreed with him. She was gaining weight on her growth curve and had never had pneumonia. Both would be likely to have happened if she truly was aspirating. The pediatric GI doc encouraged me to continue breastfeeding her as long as I was willing. You’re doing something right, he said.

Something right, indeed. No ear infections, no major illnesses, no pneumonia. All common for kids with clefts and especially kids that are aspirating the way Kaia was supposedly aspirating. It makes me wonder how many kids have feeding tubes inserted that don’t really need them. I am not in any way questioning the parents of these children. I just knew that the right decision for our daughter wasn’t a feeding tube. We couldn’t believe that she needed one. We felt if it were true that she was aspirating she would’ve been sick. Not only had she been healthy, she was gaining weight. It didn’t make sense. We weren’t going to put a feeding tube in our daughter and invite all the negatives that go with that (oral aversions, risk of infection) when there was no sound reason to do so.

So I continued to breastfeed her. And I continue to do so. The challenges have changed but persist. Kaia has gone on several mini nursing strikes, usually when her routine is off. Travel days of vacations are usually tough, although many times she has nursed well on planes and fallen asleep doing so. Since about 7 months on, Kaia prefers to breastfeed in a darkened, quiet or noise machine-d environment. I usually feed her in the same rocking chair in her bedroom, whereas at first she would breastfeed anywhere. She went through a period of biting at around 9 months. I used the technique of saying “no bite” in a very firm voice and setting her on the floor for a short time. The biting ceased very quickly. Now she will play and lick at the nipple at the end of a feeding. She has almost all her teeth now; a baby beginning to bite does not equate an inevitable stop to nursing.

Over time, Kaia and I developed a rhythm of breastfeeding. I found holds, or breastfeeding positions, that were the most comfortable for both of us. Instinctually, I developed techniques to assist her feeding that I had never seen other breastfeeding moms do, at least in public. I would lean slightly forward over Kaia, so that gravity could assist with letdowns. I also used the method of compression during feeding to keep the milk flowing, and used hand expression, especially at the end of feedings, to completely drain the breasts without having Kaia needing to work so hard and tire with feeding.

We are slowly weaning. Kaia is nursing on average 3 times a day now. I still get pressure to wean more and quickly. She isn’t eating more solids because of the breastfeeding, people have said. She isn’t drinking more from a cup because of the breastfeeding, people have said. A select few people are vocally supportive of our continued breastfeeding. We finally found a cup that worked for Kaia (her wonderful OT recommended it). Kaia drinks well from it on the rare occasions when I am away from her and she misses a breastfeeding. She doesn’t the rest of the time, because she is getting enough milk from me. I don’t worry about it anymore. I know she can drink from a cup and the time for sole cup drinking will come soon enough.

I feel so fortunate to have been able to fulfill my dream of breastfeeding my little girl. I didn’t have many breastfeeding role models, and even the ones that I did have didn’t understand how breastfeeding a baby with special needs was different. I truly feel like if we could do it, almost any new mom can. I especially want new moms of children with special needs to know that it is not an absolute that their baby will not be able to breastfeed. It does take more commitment. It’s a commitment that has been so worth it for us. I share our experience here to give hope and a realistic view into how breastfeeding a child with special needs is possible.

The stars were aligned

Last night was an exciting night. We went out for dinner and decided to brave fate by eating at what I dub a "sit-down" restaurant. Some of you may recognize that term. I don't exactly know where it came from but what it means is a restaurant that has a waiter who comes to take your order and brings you your food. It's not a buffet (our restaurant choice of late b/c it doesn't matter if the food gets cold when baby fusses, you can always get more) nor a fast food restaurant. Anyway, we rarely eat at them these days, as I describe in another post. Last night Kaia was very fussy before we left the house. I was concerned that it was going to be a bad dinner experience. However, once we got to the restaurant she was fine.

A couple things helped. First, we went to Applebees. We had never been there with Kaia in tow. They have great highchairs. None of those generic wooden high chairs. These actually were a little more supportive and allowed her to sit closer to the table. I also brought more goodies in her goody bag. She had her crayons (the hostess also gave her some), several books, a dolly, etc. And her favorite: a shaky ring rattle that fits perfectly into a generic onion soup mix box. She loves to take it out, shake it, and put in back in. Over and over.

I broke out her rubbermaid straw cup with her thickened milk and she did the usual - completely rebuffed it and continued playing. She played nicely throughout our whole meal and charmed the manager and server as I described in the post below.

Then we got our dessert. One of those dessert shooters things. The hot fudge sundae kind.

Kaia has been entranced with our adult metal spoons for a while now. She has been working on scooping with them in therapy and with us outside of therapy. She's got the scooping thing down cold. She just won't bring the food to her own mouth. She will feed us, the dolly, or fling it to the floor, but she won't feed herself. Last night, at the restaurant, she still wouldn't feed herself with the spoon. Frankly, I wouldn't even let her try there b/c it would be a huge giant fling fest mess.

But, the look on her face when she finally let me give her a taste of the ice cream. It was like this surprised, "wow, what in the world is this tasty concoction - I never knew food could taste like this" look. So we bribed with the ice cream in order to sneak in bites of all her other food, and she ate like a champ.

This wasn't the first time that we've given her ice cream, but really the first time that we've gotten that reaction from her. After I had just told her nutritionist, OT, and speech therapist that against all standard therapy advice, she didn't like cold stuff. Truth is, for the past few weeks, she hasn't. Of course, just when we think we've got Kaia figured out, she changes the rules of the game.

I'm not sure that this is the best way to feed her (bribing with bites of ice cream), but at least she ate. At a restaurant. I consider that progress.

Body Parts

An update on Kaia's body parts identification. Since my first post on Jan 3rd, Kaia has progressed from being able to identify her belly button when asked, to now also being able to identify her hair, nose, ear, and is learning her mouth and toes. It's so cute - she will shake her head when we ask her, "Where's your hair?" Then, we ask her to touch her hair she will do that. Sometimes she gets confused and will point to a different body part but most of the time she gets them right. The manager at the restaurant last night stopped by our table to chat and told Kaia how pretty her hair looked and she immediately put both hands to her hair. Then she waved Bye Bye to him when he walked away. I think he was very charmed. Who wouldn't be?

Welcome!

Welcome to Special Insights! This is an exciting post for me. I've been wanting to start a blog like this for awhile now but am just finally getting around to it. As it says in the about me section, I have a beautiful daughter, Kaia, 18 months old now, with special needs. She has a rare chromosomal syndrome called 22q13 deletion, aka Phelan-McDermid syndrome, that causes global developmental delay. Kaia was also born with a cleft lip and palate, and a multicystic kidney. At 11 months age, she was also diagnosed with dysphagia (swallowing difficulties). On this blog I hope to document her amazing progress, to a couple ends. One is selfish, to keep a journal of sorts of her early years; another is to communicate in an efficient manner all that is new in her world to those family and friends who are interested; and the last is to provide support and encouragement to, and to connect with, other families with kids with special needs. The first several months of the blog I intend to flashback a bit in order to record some of her earlier life. I will try to be as honest as I can about the joys and challenges of parenting a child with special needs.

We have something incredibly exciting to report today: Kaia is independently choosing to walk to her chosen destinations instead of crawling. This is more than the steps she has taken over the past couple months. Several times today she would go from one supported standing position to another via independent steps; usually by 2 or 3 steps. We weren't prompting or enticing her to do so at all; she just chose to do this. Later in the day we held a bowl with a block in it in front of her and she would go from a standing still position, take a few steps, stop and balance, then take a few more steps. It was great fun to have her walk around the kitchen this way. Very, very exciting. Of course after all that excitement I felt a renewed commitment to have her work on her trunk strength (her PT says this is key to her being able to walk well independently) so we put her on the ball and blew bubbles at her. She again approximated saying bubbles. (She had done that for the first time earlier this week). SO much new stuff today!

She is also walking much better with one hand held. She gets very impatient and intolerant of sitting in the cart while shopping. Today we were at Target, though, and instead of having her push the shopping cart, which she loves to do, I had her walk beside me holding one hand. The carts there are not so easy for her to hold into in order to push. I think she was frustrated that she couldn't push the cart and that I just wouldn't carry her (that's what I most often end up doing - and man, is she getting heavy), but she walked that way up and down a couple of the short toy aisles with one hand held. A few months ago she would just fall to the side almost immediately when we tried to have her walk with one hand held instead of both hands held. I can really see the progress when I think about that.

Kaia is also getting closer to being able to stand from on the floor. She will now do "down dog" yoga pose upon a verbal prompt and even just when she feels like it, and just needs physical help shifting her weight back onto her heels to stand. She seems so proud when she does it.

Also new this week: Kaia can consistently find her own belly button with a verbal prompt (she has been fascinated with ours for a couple weeks now); and she is babbling again after several months lapsed. She is also squatting much more from a supported standing position (holding on to the table with one hand) while she squats to retrieve an object on the floor and return it to the table with the other hand.